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meningitis & septicaemia can kill in hours!

People who are faced with meningitis and septicaemia have to act fast to help save a life.

Long term after effects

353 comments

Posted by Lisa Boyd on 01 May 2014

Hi, my name is Lisa and I had H Flu Bacterial Meningitis in 1980. I was a little over a year old. I was in a comma for a few weeks. I am now 29 years old and my health is getting worse. Some problems are: Balance problems, loss of feeling and movement in left leg and foot, headaches, chest hurting, tremors and spams, bladder problems and lack of memory, I can only remember snipits of my life- when most people can remember their whole life. I have none. The Dr. first thought I might have Multiple Sclerosis) and when they did a brain MRI I did in fact have white matter lesions. As soon as they found out that I had Meningitis they blame everything on Meningitis. It is very clear that I am getting worse. Is there any one that has these same issues?

 Thanks for your support, Lisa

353 comments

Posted on 27 August 2014

Comment by Victor Rowell

Had bacterial MG at 9 yrs of age in '71. fifty two now. Was near death,but pulled through.For yrs i have had several issues. trembling,stuttering,terrible depression,ect. I have seen no Dr. Its getting worse. What could possibly cause this.Any advice would be helpful. Thx.

Posted on 26 August 2014

Comment by Adrienne

My name is Adrienne. I am currently 27yrs old. Just after my 11th birthday I went to the DR with what we thought was the flu and turned out to be meningococcal meningitis (and septicemia ).I remember waking up on a Sunday not feeling well. Just felt slow and really tired. I remember my brother hitting me with a pillow and it hurting my head like it never has before. That night I took a bath and was shaking and my mother just figured it was bc I had the chills from my fever (dr later said this was a type of seizure). Went to the dr the next day and woke up feeling very stiff with slight red spots all over my body. By the time I got to the Dr's office I could no long walk. It felt like I was being stabbed all over by a million little knives. Luckily the dr knew almost immediately and shut the office down and had me flown to the children's hospital. I know I got several spinal taps and tests done right away and after all that was a blur. I remember my red dots everywhere becoming more and more prominent and my joints turning purple. At one point they started discussing with my parents about amputation. Luckily I had an amazing Dr (Dr. Martin Kleiman of Indianapolis). He told my mom there was A) no reason he could think of that I was alive and B) unfathomable that I was leaving with all my limbs. I know it took a long time and lots of therapy before I could walk and be active again.
I have always had mild to moderate joint pain since then. Especially in my hips and knees and ankles (which were the worst areas while sick). I have a VERY poor memory know of anything when I was a kid / preteen. I have a hard time concentrating and am always tired no matter how much I sleep or how well my diet is (everyone always says "eat better"). The pain in my joints have worsened. I get light headed and dizzy a lot. I have problems with low blood pressure.My circulation is very poor and some days I just feel like " I cant do this". (no I don't have diabetes...it's been ruled out) I did go to a dr and laid out all my problems on the table and when he saw what I had had when I was 11 he pretty much threw the towel in and blamed that.

Posted on 15 August 2014

Comment by Howard Cherry

I to when i was 6 month old in 78 had h-flu meningitis the drs told my grandma i wasn't going to c my first bday now I'm 37 and can't remember anything b4 i was 6 and i lose feeling in both legs every so often where i can't walk. i tell the drs this and they're doing nothing bout it right now

Posted on 04 August 2014

Comment by Amy Sillito

I had Spinal Meningitis when i was a few weeks old in 1976. My parents said I was in the hospital for over a month and they did many spinal taps. They also had me hooked up to many IVs in the spine. They told my parents that I wouldn't make it and that they needed to think about funeral plans. I am now 37 and have MAJOR back issues. My bones are degenerating, my neck has herniated disk, my lumbar has 3 bulging disks, I have a hard time remembering things, I have major twitching in the legs/arms/back/buttocks/hips, i have balance issues, I can't walk for no more than 10 mins or my back spasms and I am on the floor, I have had issues with constipation since I can remember (right now I am 3 1/2 weeks constipated and only able to go when medicine from the dr). My dad and mom think that my issues have to do with the spinal meningitis but when i ask the dr they said no, there are no long term affects. After reading this I am starting to think the drs are wrong. Does anyone else have back/neck issues like me that had spinal meningitis as a baby in the 70s?

Posted on 31 July 2014

Comment by michael tyndall

I had bact. meningitis at age 23. 37 now but have learning and concentration issues, memory issues... but my main issues are sever bladder spasms, leg cramps and loss of sensitivity to genital areal. I worked for a chiropractor a few years ago and he used an erchonia cold laser - 635 nm - it helped to restore some of my insensitivity. I never made a full recovery though. I have not had an MRI. I feel my damage was mainly to the sacral nervers. Sounds like maybe you had more damage to the brain itself. You might want to research usage of the erchonial cold laser and see if there is the possibility of restoration and healing with your issues.

Posted on 29 July 2014

Comment by BRITNEE

My son is 4 now, but he had meningitis at 2 months old... He is "different" but very smart... He cries over little things... Very emotional... A little ocd, but anytime I Mention it to a Dr, they say it's just his age, it's BC he's the middle child, but I do believe it stems from meningitis... If anyone can point me in the right direction for any kind of further research please email me britnee313@gmail.com i also realize this is an older post, but I thought I was the crazy one assuming this until I found this to read... Thanks :)

Posted on 25 July 2014

Comment by Richard

Hi everyone! I reside here in the Philippines.Just want to share mine when I suffered TB meningitis just this February 2014. I just did a headache on the night of Saturday, the following day, Sunday I suffered from severe headacha and the same time vomiting almost every hour.I thought it was only vertigo which also my prior sickness. The following day, Monday, I already have double vision, I was rushed to the hospital. I undergone a lot of test, CT scan MRI, kidney, Hepa etc. The doctors can't find my sickness and every as I stay in the hospital, i'm getting worst.It was only after 3 days when the doctor did a lumbar tap and found that I'm positive with TB meningitis, I was in the hospital for 11 days.

Even after discharge, I still felt drunk, I have imbalance,I still have pain in my left ear and numbness in my left arm and face. According to my neurologist, time will heal my sickness as I'm still young. Though I did back to work, I felt I can't do the same thing as before, my motor has gone slow,I wasn't as sharp as before.

I'm always trying my best to recover as I have my family to support.

Posted on 21 July 2014

Comment by Terry Williams

Hello to all,....I am a 66 year old male.....I have enjoyed reading all these comments..and man can I relate...back in 1967 in the Army at Ft. Knox, Ken..I contacted mennoccocial meningitis....little did I know what would happen to me.....the first year after the episode...I started having headaches....so bad that suicide seemed the only way out of the pain...I went to a VA in Lou. Ky...and they botched the diagnose something awful..completely missed it....I wouldn't put up with what they wanted to do to me...so , I suffered many years until around 1985 when I started to having seizuers and so scared of what was happening I wouldn't tell my wife or doc....then as things went down hill....the ringing of the ears , the confusion, memory loss....loss of hearing, till one day, I coughed one day, that, a bomb went off in my head...and the brain stem broke a little from my cortex? all that it hooks to...and I nearly died..finally a doc at a neuro hospital in Nashville, got it right...and did a surgery where they put a patch ,..in my head...had a chari malformation....but to my dumb luck..i am one of the 2 percent he says that my body rejects the synthetic patch...headaches non stop..i live on furiocet...and Cambia.....now for over 10 years...and they won't re operate...says it will be a lot of brain damage....I have quite a bit of leakage around the cut....and I believe that to be spinal fluid...might be causing much of my headaches..but now I live across the country and I cannot find a neuro doc..that will re operate....I am in humble attendance to all you people who have left a comment...I will pray for those of you who I remember to do so....I fought the VA for over ten years and finally won....but who knows how long that will take to get any help there.....you know with the scandals and all.....?? you know what is , I think the worst of it all? one day I over heard my wife...tell my doc....I want my husband back...this is not the man I married....she didn't mean to be mean...she is depressed , she is my care giver for over 43 years now.....it hurt like a )))(*&(^*^%&% you add the words..and they will be the right ones...I live with so much that is wrong...now blindness comes...vision migraines very often.......can't work...don't trust myself to drive anymore....I don't think there is any answer...or help..only prolong what I left..... God help all of you..............all I heard most of my adult life......you are a liar...nothing wrong with you...get back to work....you can do it if you will ...things like that...........this chari malformation affects more than you know....my pancrease, kidneys...curverture of the spine...went total sep once.....and nearly died .....when it comes to this brain thing....they don't know all they claim to know...it is too complex....they do know some things...but not what we need is better understanding of what is...so they , the medical people can help us.....stay at it..don't give up......and don't believe everything they tell you......

Posted on 16 July 2014

Comment by prahish Shakya

Reply to Samantha

I was also contracted with Bacterial meningitis when i was 5 yrs old. I also do have some similar problems as yours. I think Taking to someone who knows how it feels might help lot. I think i may help you in some ways. Sharing the experience and problems facing... relieves much pain.
So taking might help.

REGARDS Prahish!!!

Posted on 15 July 2014

Comment by Patti Elkins

I had meningitis 5 times between ages 6 and 12. Im 51 now. The doctors told my parents after the third time I had it that I wouldn't make it through another, then I had it two more times. Guess God had other plans. I lost all hearing in my right ear. I had a suspicion that it's the cause of some memory problems, directional inability and balance (from hearing lose). I also have ringing in my ear. I think if I had of changed to a plant based whole food diet that I'm on now my body would have recovered and my memory lose and direction problem would have been less if not gone away altogether. Plus all the other benefits you get from eating this way. And I wouldn't of had the lung tumor at age 32 and lost half of one of my lungs either. Hind site right.

Posted on 15 July 2014

Comment by Haley P

I fell ill the summer before my junior year of college. It began with extremely high fevers and headaches. One day I started to throw up, shaking uncontrollably, lost my vision and my sight was blury for more than 4 hours. The ER claimed I was dehydrated. A week later the same thing happened. It took over a month for me to get diagnosed after my PA suggested I get a lumbar puncture.

My spinal fluid had a mix between bacterial and viral infection. Has any one else's test came back that way? My doctors could never quite define if I had encephalitis, viral or bacterial meningitis. It was some strange mixture. I also had some really awful floaters in my eyes. Like I had lead shaving all in my eyes. They went away finally. It took me months to fully recover. I still have a hard time remembering things short term, get headaches and fatigue.

Posted on 14 July 2014

Comment by Samantha

My name is Samantha. I had bacterial meningitis when I was 10 months old. My mother told me that she had to take me to the hospital everyday to get shots in both of my legs. I am now 23 years old and lately I have been experiencing problems. Dizziness hearing loss vision problems ear aches fatigue migraines depression and general central nervous system problems. Difficulty keeping focused. Easily distracted. Memory loss. The list goes on. I just recently went to the er because it was just too much to handle. They discharged me with vertigo. I've had vertigo before and this is worse much worse. Almost unbearable. They gave me meclizine 25mg. Similar to Dramamine and over the counter motion sickness meds. Nothing has helped yet. It hits me like a ton of bricks and I feel horrible. I'm tired all the time. Loss of interest in everything I look forward to is regular to me now. I just want my life back.

Posted on 08 July 2014

Comment by Michelle Diedre

My name is Michelle, I am 34 years old. I had Meningitis at around the age of 6 or so. I was hospitalized for a couple weeks and was told it was a miracle that I made it and completely recovered. Now I am on Disability for Chronic Migraines and suffer many of he mentioned conditions. I have been researching info on migraines when I came across this and now think I should bring it up with my Physician. Up to know I blamed all of my conditions on the migraines but am know thinking it may be long term effects from the Meningitis. Occurring conditions are- lack of memory and memory loss, migraines, depression, numbness in hands, poor vision, sleeplessness, sense of confusion, etc, etc. Has anyone actually found any standing research on the long term effects, or spoken with a medical advisor?

Posted on 08 July 2014

Comment by Jill Leuzinger

My name is Jill. I contracted Staphylococcus aureus meningitis. Since my BA is in Microbiology once I felt the stiff neck I knew I had some sort of meningitis. I immediately went to the ER where the ER doc wanted to send me home. I had called my pain doctor prior to going to the ER and he admitted me. We have all been there; 10 or so days in the hospital and at home IV antibiotics through a pic line for 6 weeks. I also have a MS, Virology. I tried to go back to work after 8 weeks. I had a Govt. job. I had sent someone to OGC and had her transferred due to a medical condition so I thought it would be the same for me. I could not even remember that event. The administration at the time would not move me to a simple job. I was at the top of my game, bright, ambitious. Mind you I was on FMLA. They took me out of my job, but I still had to do the work that I knew no one else knew how to do plus be re-trained on the bench after 15.5 years. They thought I was doing drugs or just blowing things off. I got a re-infection during that time and had to stay in be for a week vs. going to the hospital. Not long after that I did get readmitted to the Hospital. The stress of what upper management was doing was causing me not to thrive. I left without unemployment on April 3, 2012. It was cruel and evil. Anyway, I have memory problems all the time. Lately I have had an issue with weight loss. 30 pounds in a short period. I got the regular blood work and nothing showed up. I am on a anti-depressant and also have anxiety. It is humiliating, as we all know,. To be bright, high IQ and then next you are struggling to remember a simple word. And for me no one believed me at work. A person used the situation to her advantage. Yes there are people like that out there.
This is life on life's terms. Acceptance- not yet. I have bladder issues and severe back pain. I found a medicine that keeps me clear headed but might be the cause of the weight loss.
At 18 I had a problem with ethanol so any medications are suspect. There are individuals that who do not have the same solution ideas but they have not been in this body. My kids even look at me differently. From great scientist to someone who barely functions, makes lots of mistakes and feels sorry for herself. My marriage fell apart. I am 52. I lived. I had the regular staph not MRSA. I found a solution to the pain that keeps me clear headed. I have three beautiful, bright children. I have a roof, food and cloths. I work on spiritual answer which is hard for a scientist. I do believe there are lasting symptoms and conditions. I have many of the ones everyone has mentioned. Not alone and stubbornly moving forward. I thank every one of you for sharing your experiences. I will keep yelling for all of us. Warm Regards my friends.

Posted on 07 July 2014

Comment by prahish Shakya

Reply to Audre

Hello Audre! I am Prahish and m also a 23 year old boy and also was affected with meningitis at the age arounf 4 or 5. I do also have some similar after effects like a little clumsiness, conceentration problem, emotional instabily, mood swings and some others.
I also hav not talked to the doc about my conditon, You and i have same problem. I also hav nt told anyone about my problem. M nt sure wat the doc says about it. I am afraid that it may turn all in wrong direction, so haven't told anyone about it. But its making me burn on inside me.
So i think we should talk about it . I think it may help alot.

Regards Prahish!

Posted on 25 June 2014

Comment by Ann Opager

In 1968 i was 3 and was sleepy, goofy and kept falling down steps. My sis brought me into the e.r.. eventually my dad was told (after days of tests) I had spinal meningitis. i was in a coma for 4 plus weeks, My dad was told *pray i cant do any more she is in God's hands* Now 21 plus yrs :p i have times i trip unexpectedly because 1 leg wont lift right. I have certain memory probs (as i work with memory care patients and see effects) i feel i show these traits of memory loss. Just wondering what other issues (like unexplained pain and numbness is related

Posted on 24 June 2014

Comment by Prahish Skakya

Reply to Emma Fawkes.
Hi Emma, this is Prahish
What are the problems that you are suffering from that thyroid disease?
Is that about height or something else ?

Posted on 24 June 2014

Comment by Audre

I had Meningitis when i was 5 months old and can obviously remember nothing from back then. The doctors told my parents that i was going to keep something behind and it`s not a good thing. I was either going to be paralysed or have some kind of disability. I got out lucky and turned out to be healthy. I an now 23 and I think that having vision problems, loss of memory and balance, dizziness, headaches, burning chest, starting to stutter because of muscle spasms, i started to lisp and the list just goes on. When i was still in school i had difficulties keeping up with my work and couldn`t understand why because my brother and sister was "A" students an me as a middle child was struggling, only later when i understood meningitis i came to accept my situation.I have not consulted a doctor about this because i am so scared of what he might say. Reading all these comments made me realize that I am not the only one suffering from these problems and made me think of how serious this really is. do you think i should consult my GP on this?

Posted on 18 June 2014

Comment by Emma Fawkes

Hi. I had meningitis when I was 25, which is almost 20 years ago now. The GP refused to see me but fortunately I had a concerned flatmate who saved my life and sent me to hospital. I was told that I was lucky to survive.
After the meningitis, I supposedly recovered completely apart from a touch of double vision, which my brain corrects for. However, I developed an underactive thyroid, bringing a myriad of its own problems, and rather severe migraines/headaches, which seem to be neurological in origin. I also suffer from peripheral neuropathy.
I am healthy, exercise well and am thin, eat well, have a good job and 3 lovely children and a wonderful husband. However, I know I am not at my full potential due to my illnesses. Are any of these related to my meningitis? I always wonder.
I know I am lucky to be here, and lucky to be functioning, so this is not a moan, but I do wonder if anyone else has developed thyroid disease. I also wonder how many of those with fatigue and weight gain and depression are hypothyroid but undiagnosed?

Posted on 10 June 2014

Comment by Prahish Skakya

I am also very glad that i found this website. I have been reading your stories from past few hours. All of us are going through a very hard time.
I think i was also contracted with some meningitis at the age of 4 when i had a serious headache. Docs said to my parents that they may hav seen symptoms of meningitis, only that much. from then i lived my life as a normal person but i noticed i do hav some problem in me. i really didn't cared about the meningitis thing. I do have mood swings, emotional instability, behavioral problem and some speech problem. but i thought it as my nature. I was never good at anything, i couldn't get proficiency in at least one thing.
But i was living more or less happily .
But one day i decided to know about meningitis, then after reading about it think i understood the problems of me are all from the after effects of meningitis.

I am not sure it its after effects of meningitis, but problems comes to be those as the after effects of the meningitis. till date i have no idea if there is meningitis or not in the report of the headache treatment when i was 4.

After reading all the things i have become more vulnerable. I only think about the meningitis things. I think after knowing about it i am getting worse day by day. I have started worrying a lot, my self-confidence is like all gone. I think i cannot do anything and keep on staring all the time thinking that i have those problems in me. Do i get better with time? do these after effects go by any method ?

Does this reading and consulting a doc about the condition we are having helps? Or it just helps to deteriorate our self?

I don't think consulting a doc and having medicine helps. everywhere i only read that as the time passes it only gets worse. I think consulting to a doc just helps to make our health bad instead of getting some help.

Posted on 06 June 2014

Comment by Joe Housley

Hello, my name is Joe and I am a Private Police Officer as well as a Private Investigator..

My wife of 18 years has been DX w/treatment resistant refractory Majior Depressive Disorder. She is 49 years of age.

This depression has developed over several years and is now of great concern. She had to levave her job of 14 years as a result and now is nearly catatonic.

Meds, talk therapy and other treatments simply have not worked. She did try and commit suicide about a year ago.

Her mother thinks that this is a result of her (wife) having had Bacterial Meningitis at a very young. I do not,

My question is this: Could her bout with Meningitis caused a latent presentation of MDD?

Secondly, does anyone know about this Ketamine Treatment for severe depression? I have done some research and it does seem to be an alternative to ECT.

Since she lost her job, she has no insurance however, we were able to get her Medicare Disability.

Any advise or direction would be appreciated. I am a retired Paramedic from Wahsington D.C with a Degree in Pre-Hospital cars and minored in Psycology but, this Majior Depressive Disorder is a monster and I am way over my head.

I am a Vetran and all of my health issues are covered by the V.A. - including seeing a Counselor to help me help her.

Thank you for reading this and I do hope someone can get back to me on this.

Joe H.

Posted on 02 June 2014

Comment by Mike

My name is Mike, and I had bacterial meningitis when I was in high school. I was 17 and it happened in 2001. I had put off going to the hospital up until it was absolutely necessary, as I had thought I had just a really bad flu. At the time I had gone in, the doctors told my parents it was 50/50 since I had waited so long to seek care. Now I am 31, and I have a few health problems that I wonder if are related to meningitis? It's hard for me to remember things, I sometimes jumble my words when speaking to someone, making it sound like nonsense, and I'm usually tired about half the day.. even after getting a full nights sleep. I just wanted to share this and see if anyone else had any of the same things happening to them.

Posted on 21 May 2014

Comment by Colleen McGilp

To Lisa who posted today 5/19/14... I too was diagnosed with viral meningitis in 1991 at the age of 33 now in my later 50's but diagnosed in my late 30's early 40's with fibromyalgia 20 yrs ago told it was all in my head... treatment was to meditate?? impossible when caring for my children) & osteoarthritis dealing with chronic joint pain, brain fog and more. Struggling with the pain as I continue to keep a hectic schedule but I have changed my diet/vitamins with hopes that this would be my solution but this has not I am trying to research to see if having the meningitis has had this long term effect.. Dr's just keep prescribing meds that do nothing all blood studies come back neg so I am at a loss wondering what your symptoms are to see if they are like mine.
perhaps my research will come up with some answers not sure how to contact you via e-mail I have never posted before if you know how please follow up Hope your days are bright :}

Posted on 21 May 2014

Comment by Anne

Hi. My name is Anne, I'm 36, and I had bacterial meningitis when I was 3 years old. I was at the back-end of the meningitis scare, so my mom knew that something serious was wrong and got me to the hospital right away. I had a 106 temperature and was covered in spots even on my eyes. I was in the hospital for 2-3 weeks and was pumped with every antibiotic they had. They always tell me that I am lucky, because I survived. My cousin became deaf. I had no after-effects at the time.
I have had four miscarriages and four healthy kids. I developed bad knees really young and suddenly, had bad eyes at age 17 with no problems before. I have hormonal problems, but all of the medical tests come back normal. I have connective tissue disorders and have had to have a hysterectomy and an a&p repair to fix my bladder and rectum that had fell. I have nerve problems in my hands and neck when I get stressed. I also have weight problems. All of my tests come back normal most of the time, but my periods would be 2 weeks long, and my emotions were all over the place.
I was wondering if all those antibiotics and the sickness could have altered my chemistry someway. My normal body temperature is 96.3 degrees too. I would like to know if all this is related or just a process of getting older. I don't know many other people who have the same problems. And, how can I be perfectly normal with all these things happening.

Posted on 21 May 2014

Comment by John Berry

Regarding memory loss
I was in a coma with meningitis for about a month, 3 years ago. I have no memory at all of the weeks leading up to my hospitalisation, and three years later I still have trouble with short term memory and forming new memories. However all my memories prior to infection returned after a few months. I still get brief flashes of my time in ICU, but I am unable to put them into context

Posted on 19 May 2014

Comment by Corinne

Hi, my name is Corinne. I am 19 years old (20 next month). I had a form of viral meningitis at 6 weeks old. I was hospitalized for 3 weeks before making a full recovery. When I was young I had many hearing problems and often had ear/sinus infections. I was an AB student throughout school, but now that I am in college I am noticing that I am unable to concentrate and study as I have never needed to. Though, I have noticed my inability to concentrate socially before. I used to think I had undiagnosed ADD but now I wonder if it is a side effect from being so sick years ago.

Posted on 19 May 2014

Comment by kelly bewley

This comment is Lisa Boyd was so relieved when I read your cause Ive also at age7 and am bothered by my pc dr always telling me that I couldnt possibly be having problems due to something so long ago. Also on testsdone he sees nothing wrong with my left hip and leg. I dont make up the pain Im in. And Ive just started this problem this years at 42yrs. He tells me to stay off the internet, he makes me feel like a dummy cause he giggles at me while saying stay of the internet and long term symptoms from spinal meniningitis is a made up thing from people with to much time on their hands but, I know different, Ive been suffering with every one of the symptoms for a year now and I know their real. Please tell me what kind of dr I need to go to in order to get help. Please my email is kellybewley69@gmail.com thank you in advance Kelly

Posted on 19 May 2014

Comment by Lisa Daniels

I had viral meningitis in 1995 at the age of 29!! I was reading about how some of you are in pain and this and that!! Does any of you have fibromyalgia?? I have that now and was told I had it in 2004!! Just wondering if anyone else has it??

Posted on 02 May 2014

Comment by Greg Simms

I had meningitis when I was 18 months old in 1948. I am now 67 years old. I have come to grips with the after affects of the disease. I have to limit my food intake to only a select diet. One of the books I read that has helped lesson the effects is a book titled " Eating for Your Blood Type ". I think it is still available on Amazon.com. I don't know if this will help someone but it sure has helped me with my situation. God Bless.

Posted on 01 May 2014

Comment by Kelly Falk

My name is Kelly Falk and I am 22 years old. I'm from Minnesota and was headed on a spring break vacation to California on March 14. Upon waking up the next day at my uncle's house in Orange County, I had a pretty bad headache and felt sluggish. I tried to suck it up and go shopping on Sunset Strip.

After an hour drive, we arrived and as soon as I got out of the car I new it was a bad idea. With every step I took it felt like a sharp knife was being jammed into my upper back. I could hardly walk because of this. We turned around to go to an urgent care doctor. They took a strep test, which was negative but they said I had a slight fever so they gave me an antibiotic and some pain medication.

The next day I was in severe pain and couldn't touch my chin to my chest. My head was killing me, I was extremely sensitive to light and sound and my energy was gone. We went into the ER and they ran some blood tests and gave me fluids. They discovered I had mono and gave me some more pain meds and sent me home.

The next day I began to vomit continuously every half hour to the point where I was vomiting bile. We went to the ER again and this time they gave me fluids and more pain medication but sent me home without anymore answers.

On the 17th of March all of my symptoms were getting worse, especially the back pain. We went into the ER for the third time. This is when they finally decided to do a lumbar puncture to test for meningitis. My spinal fluid was clear in color meaning that it didn't look like bacterial meningitis. The test came back positive for meningitis and I was emitted to the hospital. My mom and dad flew out to California to stay with me, which was a life saver. I couldn't imagine being there alone.

I was first treated as if I had bacterial meningitis while they ran tests and cultures for about the first four days. I also had a CT scan, ultra sound on my liver and a MRI. All tests came back negative so it was determined that I had viral meningitis and no permanent brain damage.

I was hospitalized for seven days and experienced excruciating head pain and light and sound sensitivity. I was given dilaudid and vicodin to manage the pain. After they released me from the hospital my mom and I stayed at my uncle's for a few days before flying back to Minnesota.

The flight went ok and I was finally home on March 28. Since then, I have had a few follow up appointments and been in the ER once. Although I am better than I was in the hospital, I don't feel like I have improved much. I am still on a high dose of pain medication and experience severe head and spinal pain when it wears off. My most recent blood tests show an elevated level of liver enzymes. My doctors said that this could be from the mono or the medication I am on. Since they have been elevated since I was diagnosed, I am scheduled to see a gastrointestinal specialist next Thursday. I am still bed-ridden much of the time.

This disease has forced me to sacrifice a lot of opportunities, which is incredibly frustrating. I am a college student and only because of the grace and understanding of my professors, I will still hopefully graduate in May. I also had an awesome internship at a marketing and technology company since January. I've had to miss about a month an a half there now and fear that I'm blowing my chances of a full time offer. I had plans to study abroad in China this May, which I also had to cancel.

I am currently on day 43 of my illnesses and am emotionally drained. I feel helpless and fear that I will never get better or that I will have long term damage or symptoms. This is with out a doubt the worst thing that has ever happened to me. I can't even describe the extent of the physical or emotional pain that comes with this disease. The only thing that seems to help is having a strong family support system by your side.

Posted on 25 April 2014

Comment by Meg Burk

I suffered from spinal meningitis when I was two (almost 3). I was told I would most likely not make it through the night. They blasted me with every antibiotic under the sun. I was so very fortunate that the antibiotics worked and I have been a very healthy and productive woman my entire life. I feel guilty admitting I have not had any of the symptoms mentioned. I had low SAT scores which we always jokingly blamed on the meningitis and suffered from typical teenage angst. I looked on this site to see if anyone has suffered any kind of compromised immunity? After a bout with pneumonia 11 years ago I have suffered terrible sinus issues. I finally had surgery in January, but am sicker now than I have ever been. Since January, I have had staff and strep in my sinus cavity and constant drainage that is infected. I am now on my third antibiotic (augmetin and cleomiacin). My Dr. thinks my inability to fight this or respond to the antibiotics could be related to meningitis? I would love to know if any of you have anything related to this? Thanks and God Bless you all!

Posted on 25 April 2014

Comment by Emily

I had brain surgery shortly after giving birth to my daughter. Immediately after, I contracted pneumococcal bacterial menningitis. I was rushed to the ER with a fever over 105 and I was completely delerious. The doctors didn't tell me at the time, but there wasn't a lot of hope. I waited to get help because I thought my symptoms were due to the brain surgery. After a brief coma, 10 days in ICU and 6 weeks on a pic line and pole with Mirapinem and Vancomycin, it seemed that I was better. That was 2011.
I feel so stupid because almost 3 years later; I'm not okay. I have zero sense of direction, my face sort of droops, my short term memory is shot, my gross and fine motor skills are affected, I experience severe bouts of depression and panic. It became so bad and meds didn't work. I finally resorted to electroconvulsive therapy. It helped with the mood, not so much with memory. I'm so discouraged. I'm 32, I'm the mother of a toddler, I have friends who say things to me I don't remember. My husband is living in "50 First Dates." I don't know what to do.

Posted on 28 March 2014

Comment by Nick Budgen

Hi, my name is Nick and I contracted meningococcal meningitis type B on the 4 August 2012 at the age of 42. I was at work on the Friday and feeling fine, woke up on Saturday morning with the headache from hell. I knew it was no hangover as I had not been out the night before but just tried to ignore the increasing pain.

I managed to ignore it for a couple of hours and remember making a coffee and having a couple of sips and then that was it for a month…….. I was living on my own at the time so no one was aware of my illness.

I was found wondering around a local park when a lady called the police thinking I was drunk (I owe this lady my life). When the police arrived to pick me up they luckily released very quickly that I was not infact drunk but very unwell.

I was taken to the local A&E by ambulance where apparently I was very confused and agitated, I have no memory of this at all. I was quickly taken to the Critical Care Unit where after a number of tests I was diagnosed. I was at this time in a coma and within a couple of days had a tract inserted as I was getting very agitated with the breathing tube in my throat. Apparently at one point I tried to get out of bed and it took 5 nurses and 2 doctors to hold me down.

I was placed in an induced coma for 3 weeks and slowly brought round, did anyone else have any crazy night terrors and dreams???? While I was in the coma I also contracted pneumonia and Cdef which was not to pleasant however I was given my own room as I needed to be barrier nursed. After a day or two they wanted to get me out of bed as my muscles would be getting weak, this I did without aid which shocked the nurses.

Just 5 days after coming out of my coma I was allowed home which I couldn’t believe, my family thought I was joking when I text them to pick me up. It was an amazing feeling being outside after a month being in the Critical Care Unit.

I was back to work within 6 weeks of leaving hospital……. This was all due to the AMAZING care I got from the doctors, consultants and mostly the nurses that were caring for me. I can not thank them enough.

I do still struggle with some short term memory issues and do occasionally get a little tired. But after reading most of your story’s I think am incredibly lucky.

Posted on 27 March 2014

Comment by Ricco Larsen

First of all, I'm european, so bare with any linguistic errors. Anyhow, I had Meningitis as in infant and barely survived it. Only because my parents had a friend who's a doctor, that by accident had a shot of antibiotics with ham. Well, for the last ten years I've been dealing with depression, OCD and anorexia. I've always percieved myself as marely being introvert and having some mild psycic issues but lately it has gotten worse. I have to concentrate on not imagining things and often I convince myself of something that is unreal. Could this be some longterm effet of having Meningitis and does anyone have similar experiences and if so, how are you handling it?

Posted on 24 March 2014

Comment by Holly Kilpatrick

This is amazing to read all these stories of everyone with after-effects of meningitis. My husband had meningitis at about age one, in 1962. He is now 53. His parents were told that he might die or have brain damage. He lived but he does have brain damage. It is an invisible disability, he looks normal and feels very embarrassed and humiliated by his limitations. He dropped out of school at 10th grade, there was no special effort to help him, he could barely read or write. As an adult he learned to read, he reads laboriously and doesn't always get everything, but he reads a lot on the Internet. You-Tube is great because you can learn so many things from videos. He can hardly write or spell. He gets letters confused, and can't remember the months of the year or the days of the week without going through them from the beginning. He has no rhythm, he can't beat time with music or tell you what syllable is accented in a word. He can't hear the difference between bear and beer. And he has some deficits to executive/organizational thinking and memory. He always had trouble with employment, he couldn't learn and work fast enough for employers. He tries to hide his problems from everyone. But he had an oral IQ test at age 24 and his IQ was above average, it's not a matter of intelligence. And he is so much better off than some here, I am so sorry to hear of everyone's struggles. I think there should be a recognized Post Meningitis Syndrome so that this condition has recognition, and people who struggle with it don't have to feel alone and stigmatized, and be made to feel like hypochondriacs.

Posted on 17 March 2014

Comment by tushar dehadrai

We tried Hemidesmus indicus ( Anantmul) fine powder with with honey and Milk and we find very nice effect , also giving this to mother from last 7 months , as my mother suffering from TB Meningitis try this

Posted on 13 March 2014

Comment by Tom schweska

Hi my name is Tom I had spinal meningitis when I was nine months so the doctors told the priest to give me last rites they didn't think I would last the night... My parents never ever talk about my meningitis and that made me wonder what I went through???? All I know is they pack me in ice that was in 1960 I am now 54 years old and I've experienced the same… Symptoms as you all trimmers uncontrollable shaking depression anxiety terrible dreams when I was small constant ringing in my ears and a hard time concentrating..... But the good news is I was an excellent athlete in grade school and high school never had problems with balance been married to the same lovely woman for 25 years worked in the same job for 37 years have to wonderful sons ones a lawyer and the other a police officer so I've been very blessed and I'll keep you all in my prayers hang in there there's always hope.... HAVE FAITH THAT IS WHAT HAS GOTTEN ME THROUGH ALL THESE YEARS!!!!!

Posted on 10 March 2014

Comment by Lynda Jane

Hi I had meningitis at about 9 months. I am now about to turn 40 and have just been diagnosed with an inflamed liver and diabetes. However my diabetes seem to thrive on adrenaline and body seems to love being under stress and then I go into a state where I could sleep for a week. Does anyone know if there is any connection between meningitis as a child and diabetes or liver problems?

Posted on 19 February 2014

Comment by Steven Hicks

FYI; In 2000 I went in to hosp for arm infection, they opened and cleaned and put me on a vanco iv drip but half way through the bag my legs started feeling strange and didn't work so I pulled the iv got a walker that was in the small room and started fighting to walk, after about an hour I could walk and got the heck out of there but later at home I went into amnesia for several hours, stranger in the mirror stuff, blew me away and threw my apple cart down the stairs. Now I have ringing in my ears and I flunk memory test badly, but I can walk and I know who I am.

Posted on 17 February 2014

Comment by Preston J. Collins

I was born in Bermuda in 1985 during an outbreak, many children died and the hospital conveniently burned down in 88'. I did know of some of the long term effects of having the worst form of bacteria minigitis. I have never held a 40 hour job for more than a month, and if i did work 40 hours a week, 9-5 I would miss work on Mondays, thinking I was just a weakling and not manly enough to do labor. I would sleep for days on end if I exerted enough energy, I've always found that my body would turn on and off similar to opiates. It was until this last year how much pain I have been in my whole life after breaking my big toe a year ago and then my wrist in November 2013. The pain, wasn't there. In fact on a scale 1-10 my pain was 2-3 of incident and settled to 2. I really think I have neurological disorders from this. Sometimes my sexual organ doesn't feel anything at all. This year in january I started my work out routine again, by all means im still a twig that eats like a race horse and need lots of calories and protein to make in through half the day with out passing out. I am constantly fatigued. So much so my mother nicked named me Mental Fatigued. I show a lot of facial tics similar to myoclonic(hypnic jerk) through out the day, I've also noticed I get upset easily and very irritable if I do not sleep enough (9-12 hours). I've been playing music my whole life, but I could never perform for a normal period of time without rest. My wrist would get tired really fast, and sometimes during practice I would just lay there on the ground and look like a heroin addict. When I am fully charge I have the same spasm as a TWEAKER would have, and be accused of doing meth. I wish I could afford insurance or could prove my citizenship for DES assistance, but I do not qualify being in a statelessness of de facto. I am 29 years old now and finding my life extremely hard to maintain, as far as daily showering, motivation to do something, and have no real schedule nor can I stick to a schedule. I have recently started to take tramadol illegally obtain. I am able to get up at 8 am and stay up till my bed time 9 30pm. But I am growing resistance to it and started to doze off around mid afternoon. I've been prescribed Dexadrine in my youth along side of Clonadine, and other drugs I cant pronounce or remember. I've tried to gain weight my whole life, but I really think my brain receptors are not allowing my body to get the right nutrient from the food i eat or vitamins I take. I am at a stand still, and constantly hot and sweat too much. Right now my girlfriend came down and said it's cold in the room. I am sweating. -_- this has been ongoing in my life since i can remember and my lumbar is fused (funny walk)

Posted on 13 February 2014

Comment by jennifer howe

I am so happy i found this page today. i was born in January 1994 and in February 1994 i was diagnosed with bacterial meningitis, given to me through my cocker spaniel licking my face. All my life i have had depression, anxiety, muscle problems, aching body (more so on my left side), easily broken bones, memory problems, easy bruising, and so on. My parents took me to doctor after doctor to find an answer. They all put it off as effects of the meningitis or growing pains, both of wich they said i would grow out of. After i graduated high school in May of 2012 everything seemed to get SO much worse. i couldn't hardly function. over the course of 2 years i have been diagnosed with the following: Fibromyalgia, Hypothyroidism, GERD, TMJ, ibs, Chronic Fatigue Syndrome, Chronic Daily Headaches, Major Depressive Disorder, Generalized Anxiety Disorder, and Cyclothymic Disorder. All of which i have had numerous doctors tell me have stemmed from have bacterial meningitis. i also have a high tolerance to medications, collapsed veins, and an immunity to anything Penicillin stemming from treatment when i was in the hospital. still knowing my diagnoses and with treatments for each my issues that i have had my entire life get worse each day. i am 20 years old unable to go to a normal university, unable to get and hold a job, and unable to go out regularly like everyone else my age due to all these issues. i ( as well as my mother) am convinced all (or most) my issues are long term effects of my meningitis.

Posted on 12 February 2014

Comment by VALERIE RODABAUGH

I had spinal meningitis when I was a few months old, I am now 48, and have always had severe migraines and my back is so bad I cant barely bend over, from my neck all the way down is so stiff and hurts, is this from the meningitis???

Posted on 10 February 2014

Comment by Kim Alawine Cain

Reading these posts--especially the posts of Shannon Julian and Robert Page--I don't even know what to say. My God, I'm not the only one...I had viral meningitis in 1979. The doctors didn't know what to do, really, and prepared my mother for the worst. She said that I was "comatose"...I don't know to what extent or for how long (and I'm not going to call her at this hour and ask), but I can't remember anything after the spinal tap. The doctor came in one morning with a new treatment he had read about and I slowly turned the corner.

When I was about 17, I started having seizures in my sleep. My body jerks and seizes up, but I don't wet the bed or convulse. I only have them every now and then, so doctors have never seen one on a monitor. While I'm having them, I'm aware of everything that's going on. It's as if my mind wakes up but my body separates from it and starts doing its own thing. When they "reconnect," so to speak, I wake up. I can usually tell when I'm about to have one because I have very vivid dreams (usually nightmares), and many of them are recurring. I have vivid, recurring dreams often.

I will be 40 this year, and most of my problems started "presenting" after I had my son ten years ago, most likely because of the epidural. I started having numbness and tingling, and involuntary jerks and spasms in my right arm, and migraines. Like Shannon said, my right side is much different from my right side. I went to an ENT doctor, who recommended sinus surgery, so I had that done. At the same time, my neurologist tested me for multiple sclerosis because he said I had so many of the classic symptoms. I've had several MRIs because I have these symptoms, but thank goodness, no lesions. The pain, as Shannon mentioned, in my neck and shoulder and behind and into my ear is nearly unbearable. I have been to the doctor thinking I had an ear infection and the doctor told me that it was the "aphasia" and that my pain level was increasing. In other words, the pain is just going to be there. He has come to the conclusion that I just have migraines that manifest in the right side of my body, and the meds he has me taking have helped some, but now I'm quite sure it's not just migraines.

The top of my right arm is numb a lot (I've burned it a couple of times), I have blurry moving spots on the bottom of my right eye at times, and I have restless leg syndrome. After I had my daughter 6 years ago, it got a little worse. I started having constant kidney infections. I was diagnosed with interstitial cystitis, which my neurologist and urologist insist is hereditary. Everything I've read says it's also caused by nerve damage, and nobody in my family has interstitial cystitis but me. The pain in my upper right side is the worst. It's why I'm awake right now. If I go to sleep when It hurts in that pulling, tightening way, I know I'll wake up in worse shape or with a migraine. The headaches, pain in my ear, and even pain around the right side of my face and jaw are bad and nearly constant. When the migraines (if that's what they are) set in, they hang around for days.

I'm a happy and positive person. I like to go and do things. Like others on here have said, there are days when my body just makes decisions for me. And, I definitely don't want to be on pain meds every day, but it seems like I'm headed that way. Also, as others have mentioned, I also feel very lucky to be alive with my eyesight and vision. It could have been worse. And it's hard knowing that the pain probably isn't ever going to go away, but it has been even harder having my doctors take things lightly, and at times even act like it's in my head. When I've tried to tell him that I thought it was all related, he would say "who's the doctor?" or "stay off the internet." But now I know.

I will be so relieved to see it recognized as a condition. Then maybe there will be some research and treatment plans. I'd like to talk to some of you about it a little more, especially with Shannon Julian. I can be reached at kimcain1974@gmail.com.

Thanks for sharing. I can't tell you how much better I feel knowing I'm not the only one with this crazy mix of symptoms. Best of luck to you all.
Kim Alawine Cain

Posted on 10 February 2014

Comment by Kim Alawine Cain

Chas Jay--I just read your post. (Not sure how I missed it earlier.) Thank you for your research!

Posted on 07 February 2014

Comment by Edith kendall

My daughter contracted meningitis in 1977. She was 6 months old. I was unable to convince the Drs. something serious was wrong. Took me 4 drs., and 2 hospitals to find out she had H. influenzae. By hospital #2, she was unconscious.She was in ICU for 2 weeks, where she made a miraculous recovery. She had to relearn to crawl and sit up ,but her hearing was fine and she seemed perfectly "normal" otherwise. There was no regular assessments, except regular well-baby checks. And maybe they didn't know so much back then. She is now 37 and has lost 4 children due to not being able to care for them properly. She has made many, many poor decisions for herself through the years. She did not do well in school, but did manage to graduate hs. She has so much anger and has never been able to explain it to anyone. Drugs, alcohol, homeless,
DCF just brought me baby girl #3. I know she loves these kids, but something holds her back from holding down a job. After reading the other comments, I think my hunch was right. I've wondered if the meningitis had something to do with her problems. I don't know if there's help for her or even if her caseworker will take this seriously. I am not sure where to go next.
Michelle's Mom

.

Posted on 07 February 2014

Comment by Shannon Maguire

1977 I was under a year old. I took a trip with my parents. When we got home my mother came into my room one morning and said I was staring at the ceiling with a confused look on my face. I was admitted to UCLA when it was determined that I had bacterial meningitis. I dont think I had any long term learning effects but when I was 20 years old, I had a complete clinical mental depression and have had to be on medication ever since. I sometimes wonder if it could be related.

Posted on 04 February 2014

Comment by Jack Tumlinson

wow. Don't know why I came to this site but I am glad I did. Now I know I am not alone. I developed spinal meningitis and encephalitis as a 2 year old child. I was in a coma for a few days. Some of the immediate effects was I developed a stutter. Don't know if the disease caused it but I feel like it did. I am now gong on 50 and have some problems. Balance is a growing problem. My hearing is going and I have frequent bouts of vertigo. My memory is so shot that sometimes I can't remember what happened a few minutes ago. I shake a lot. I thought I was going crazy until I came here. I was walking outside and something told me to google the disease and see if there were any lasting complications. It almost came to a point where I wanted to commit suicide to end this madness. I know I am not crazy and not alone.

Posted on 31 January 2014

Comment by Mark Anthony

I am 35, and had Bacterial Meningitis at the age of 9. My decision making, short term memory, and overall ability to live and support myself and my family (I'm married with 4 kids :)) i questionable at best, and I really really hate to be reminded how I 'could do better'! I thought that this was just the way I am - I strongly believe in holding yourself to account for your failings, and not resorting to excuses, but after reading these, I wonder.... My heart goes out to anyone dealing with this illness and/ or its after effects (others that I suffer from include joint pain, and some scarring). I don't like to mention these effects, because I consider myself to have gotten off lightly, but it's nice to know that, even with the small stuff, there are others out there who understand!

Posted on 31 January 2014

Comment by Richard Page

Sounds to me like many of you have varying degrees of chronic cerebral venous thrombosis often associated with meningitis. The venous sinuses are formed by dural folds which form the blood drainage system of the brain. in such proximity to the meninges it is likely these cerebral veins were infected as well. This causes clots to form thus the condition becomes thrombosis. It can be iinsidious and therefor difficult for doctors to suspect. After your meningitis has been treated and you haven"t been treated with anti platelet therapy the thrombosis forms scar tissue in the veins. This causes slowed cerebral profusion (blood flow) and the symptoms are similar to those of multiple sclerosis. Good luck all.

Posted on 28 January 2014

Comment by Donna Wood

I'm addressing this issue from a mother's side. Our son contacted bacterial Spinal Meningitis (Haemophilus Influenzae) when he was 15 1/2 mo back in 1975. As a result, he suffered only a hearing loss (60%-70%). He attended CID (Central Institute for the Deaf) and then was mainstreamed. Everything else was just fine...though we thought. He was an exceptional athlete and seemed to be normal in every other sense. He always seemed to struggle more so than normal with school. He always wanted to do things on his own (which he couldn't) before seeking help. By then, it was too late and he would always be too far behind with his school work. He started suffering dizziness early on in jr. high & high school & it was diagnosed as vertigo. He had his left balance nerve removed shortly after graduating from high school. He still encounters bouts of dizziness which he in-turns will take some Benadryl during peaks of new seasons. What we're discovering is that he doesn't seem to be able to make solid grown-up decisions...even reasonable decisions. His thinking process is all out of whack. How do you tell a grown 39 yr. old that he's lacking the capability of making good decisions. Something is just missing and I don't know what to do or how to treat it. He can't seem to hold down a job, support his family & keep himself out of debt. Time & time again, he makes bad decisions and won't seek any help or advice. You just can't talk or reason with him. Can this attributed to the Meningitis. Could he have brain damage as well the hearing loss and we're just now discovering it now. I need to seek advice or council on to deal with him. His family is just about ready to give up on him and I know deep down in my heart, this isn't his fault. I can't seem to get this across to them. They think he can do better & it's his fault. I have to try to help him. Is there not any research on long term after effects and what to do?

Posted on 28 January 2014

Comment by Bethany Miller

Linda Ott,
Your daughter's situation sounds a lot like me. I am 36 and had meningitis in the summer of 1979. I am working on paperwork to file for Social Security since it is nearly impossible to work.

CJ,
Thank you for all you are doing.

If either of you wants to get a hold of me, or your daughter does Linda, me email is beegee817@comcast.net.

Posted on 24 January 2014

Comment by Elysse Johnston

My baby was 9 days old we noticed he was grunting, very sleepy, not waking for feeds, his temp hit 38.8 so we took him to hospital immediately. They raced him up to the children's ward, did a lumbar puncture and took some blood/urine samples and we then had to wait 48hours for the results to come back from the lab. He had a probe on his foot monitoring his heart rate and his oxygen levels in his blood and was being closely monitored in the high dependency part of the children's unit. (Please forgive me, I may forget some things as it is all a bit of a blur, I was so emotional and wasn't really listening to anyone) He was given paracetamol to keep his temperature down. His CRP (infection) levels in his blood were over 200, we were told these should be below 5, he was put on really strong antibiotics to try and fight whatever infection it was. We got the results back from his lumbar puncture and he had a lot of white blood cells in his spinal/brain fluid, I think about 300. His platelets were very low, around 18 and these should be 150 (I think), he needed 2 platelet transfusions, nearly a 3rd but they started to pick up and didn't need to in the end. They sent his blood/spinal,brain fluid off to see what bug they could grow and it came back as something called Coliform, bacterial meningitis and septicaemia, they couldn't grow anything from his spinal/brain fluid but grew the bug from his blood.

He responded brilliantly to the antibiotics (luckily he was on the right ones from day one) he had numerous blood samples taken, his poor tiny hands were like pin cushions and so bruised, they had to find veins in his feet to draw blood. We were in hospital for 13 days. Each day he got better and better, everyone kept saying that we caught it really early and that he was so alert. He had a hearing test shortly after we were sent home and his hearing is perfect.

He (my darling Oliver) is now 11weeks. He started smiling at 5 weeks, he laughed for the first time this week. He's the strongest baby I've known, he can hold his head up and stand with strong legs whilst just holding his hands and he has started to reach out to try to grab things.

It turns out that he had 'plumbing' problems and wasn't emptying his bladder properly which then lead to a UTI - then bacterial meningitis/septicaemia . He has something called Reflux (where urine from his bladder goes back up to his kidneys). He's been circumcised to minimise infection and will be on antibiotics (trimethoprim) until he is potty trained or however long he will need to be, to minimise him from getting another UTI which will hopefully avoid his kidneys being scarred further (we don't know if they have been damaged yet but he is weeing fine now).

It has been such a traumatic experience for everyone but he seems just like a normal baby now. All we can do is hope for the best and be positive.

Posted on 24 January 2014

Comment by Linda Ott

CJ,
I applaud your efforts in spearheading "Post-meningitis Syndrome" research. My daughter had H-Flu in 1979 and has every symptom you outlined in your post. Today she is 37, totally disabled and her doctors have made no connection to her meningitis. Have you made any additional headway?

Posted on 24 January 2014

Comment by Shannon Julian

I love finding this discussion today. Its made my day. I had spinal meningitis when I was 10 months old. I am now 42. I spent a month in Riley hospital with high temps and they tell me no one could touch me or I would scream in pain. All ,my life I have had some issues and I felt it was due to the meningitis. I just knew it, but drs don't agree with that. I feel blessed that my problems aren't as severe as some, but the left side of my body is definitely different than the right. I have weakness, joint paint and what looks like arthritis in my hands, but after many tests and blood tests it never comes out as arthritis, the drs seem to just scratch their head about.it. My neck, arm and shoulder give me great pain and its hard to sleep. But I have the chiropractor and he does wonders for me. I have dealt with anxiety attacks for 20 years. I have committed 20 years to researching them and finding out all I could on them. I went thru programs, I studied the ones and found that the ppl who were themselves victims of anxiety and over come it to be the best teachers. I have studied the bible extensively on it and can say with experience and proof it has the most accurate and correct answers to anxiety and its merely faith and trust. I have had ear issues as long as I can remember, same ear, same issues and the ringing is oh my gosh irritating even tho you can still perform its always there when it acts up ringing. My left eye has only had half its vision since I can remember. I have the opportunity to surgically fix it but insurance wont pay, so I will be paying that out of pocket and since its a little more in depth of a surgery its rather expensive. I get twitches, tingles and jerks in the left side of my body on occasions, not explainable. At night, I have so much trouble sleeping, between very vivid dreams to waking up constantly and jerking myself awake is the norm. My balance is off a lot and I have fell for no reason about 5 times in the past year. Again, no explanation as to why. Except they tell me my ear could be the cause. But what keeps causing my ear to act up for no reason? Well, I have pain in my left side, and bowel issues, they ran tests and say there is no reason and that everything is fine. Ultrasounds come out ok, but the pain in my side is real. I get spurts of tired and exhaustion to where I cant talk right or sleep enough and all I want to do is just rest on my couch till it passes, which may be months at a time. By nature I am a happy person, by nature I am energetic, by nature I am upbeat and positive and I am very active, but my body does not cooperated with what I believe at times. I read this today and I realize that my hunch could be right, it isn't in my head. Ya know, things like this messes with a person and you just know that its not right and no one really listens dr wise. Thank you for posting this. I feel so much better, is there a fix? I don't know, but I am lighter in my step knowing it isn't in my head. I'm just getting thru like everyone else, now I know a little more then I did this morning about myself.
thanks
Shannon

Posted on 06 January 2014

Comment by Phil Brown

Hi, I have read many of your stories, mine is similar but rare as I will explain. I am 58 years old and in June 2010 I contracted Bacterial meningitis after having an ear infection. The specialist said that for someone my age to get Bacterial Meningitis was like 1 in 10,000, it usually only occurs in young children. I spent 8 days in intensive care on life support and an induced coma. I was left with no hearing in my right ear and have very poor short term memory, confusion, imbalance, make poor decision at times, make a lot of mistakes typing on a keyboard, I have numbness in my right thigh and in my feet, I have become less tolerant of others, and have poor concentration. I hope by telling my story will help others to understand a bit more of this debilitation disease.

Posted on 06 January 2014

Comment by Linda Pankonin

Hi everyone! My name is Linda, and I am 48 years old. I contracted viral meningitis sometime in early August, 2013. I had a splitting headache, neck pain, and photosensitivity for about three days. I finally couldn't stand the pain so my husband took me to the emergency room on the 11th. The emergency room doctor suspected spinal meningitis and ordered a spinal tap and blood draws.

I was admitted to the hospital, and by the next afternoon I was rushed to Abbott NW hospital because I was struggling to breathe. I was intubated, later had a tracheotomy, and a feeding tube inserted into my stomach.

I had developed ARDS and my lungs filled up with fluid. My husband was told to call my family, and I was given last rites. I was in a medically induced coma for 32 days. I was then transferred to another hospital for rehab, and was there for nine days.

I had lost all use of my legs, so I had to be helped to get out of bed, stand, and have help with bathing and bathroom trips. I exercised my muscles while laying in bed as much as I could stand so I could get out of there and go home!

I have been called a miracle. The problem is, I don't feel like a miracle. I can't remember things from one day to the next. My vision is deteriorating, so is my hearing, and my right leg is either asleep, numb, stinging, or just plain aching 24/7.

I could go on, but I'm sure you all can relate to at least some of my symptoms and don't need to hear any more. I still can't believe that this even happened! Why? Will I be like this forever? Why doesn't the medical community know more about meningitis, and the long term effects that go with it?

After reading all of your stories, I have mixed feelings. First I cried because there were others like me, and I'm not alone. Then I cried because there were others like me, and we are alone, or should I say we are on our own.

I don't plan on taking this lying down. I am going to do research, bug my doctors, keep exercising, keep going to rehab, and keep on fighting! This disease couldn't kill me, and it sure as hell isn't gonna cripple me!

I wish all the best to each of you. I am truly sorry that you have had to go through this experience. I understand exactly how you feel. The most important thing I can say to you is, you are NOT alone, and you ARE stronger than you think. Don't give up!

Posted on 22 December 2013

Comment by cd

I had spinal meningitis when I was one now I'm 30 about 5 years I started getting dizzy fatigued and nausea then about 4 years ago it added abdominal pain in my left side feels like rib pain. About two and a half years ago I broke out in psoriasis and my doctor gave me a short term dose of prednisone. Wich caused crazy extreme fatique and acquired a hole host of symptoms. Nystagmus dizziness disorientation confusion memory problems personality changes tremors numbness tingling the nystagmus is constant. I have had 100s of tests mris ct other studies. Waiting for neurologist apt. Have had 2 brain mris in the last 3 years completely clear except the most recent one said partially empty sella . So I have a theory after read this bored is the meningitis cause in the long term idiopathic innercrainal hypertension.

Posted on 20 December 2013

Comment by Brooke Keefer

I had meningitis four weeks ago. I get terrible headaches and dizziness if I eat carbs or sugar. I seem to be able to control the level of pain as long as I stay away from these things. Problem is that I am losing weight rapidly. It's scaring me. Will I ever be able to eat sugar, fruit, carbs again???

Posted on 19 December 2013

Comment by Jan van der Westhuizen

Hi

I had bacterial meningitis at the age of ten in 1980, was at home for 2 weeks completely paralysed from the neck down and remember lots of pain especially in the neck and no drugs working, in and out at the doctors and finally after 2 weeks I was rushed to hospital, in an ice bath and out for several days with high fever and 3 lumber punchers later, 3 months in hospital and luckily was left with all my limbs and no scar tissue problems but it left me with a hearing impediment and neurological problems. Believe it or not but 2 years later at the age 12 I contracted the viral meningitis, when I felt the first headache at school I new exactly what it was, went home and straight to hospital and running around again after 2 weeks.

I had many headaches after and nothing showing on CAT scans, many ear operations and eventually found out I had Auditory Processing Disorder where my brain can not differentiate between background noise and what I should need so I am on alert all the time and in fight or flight mode. Over the years I suffered depression, mood swings, diagnosed with ADHD, been given various drugs for all sorts and no one ever asked or linked anything. Lost friends, lost relationships, can not keep a job long enough, can not concentrate, memory loss and the list go on. I eventually 4 years ago decided to return to uni and with huge struggles and some help I finally finished a degree in Environmental Science with Honours but I have to say it was the most hardest part of my life.

I met someone last year who is a psychologist and tried to help me through various programmes nothing seemed to help like it should in other people and the GP working with her said 'but he had meningitis' and the link was made. She e-mailed me the link yesterday and finally after 34 years now know what has happened over the years and why I am the way I am, so now it is upwards and forwards.

Thank you for all the information and all the best to all the other survivors.

Posted on 15 December 2013

Comment by Phoenix

Hi,

I got Meningitis when I was 23 years old. I was having weakness,fever,neck stiffness and photophobia for almost a month. It was only when I got fainted, I got admitted to a hospital where I was in a sort of coma for 2-3 days (however I still remember some conversations between doctor and my family during coma). I suffered a terrible memory loss after that for few months. I was having severe headache, balancing problems and even I was not able to hear from one of my ears and was having double vision. But I was very positive. My mother used to give me an ayurvedic over the counter medicine for maintaining my blood platelet along with the regular antibiotic course. My liver function, blood hb and platelet levels were awesome throughout the whole treatment but it took me 8-10 months to recover fully. My hearing problem, balancing problem, tingling sensation in the right half of body and memory problem also went away slowly within those 10 months. After 4 months of getting diagnosed and starting treatment, I returned to work and got promotion there around the time my 10 months treatment was over. Now I am 29 and perfectly normal. I was having a slight numbness in my forehead on the right side but this has also improved from the last two years. I only can't remember fully the last 6 months of my life before getting Meningitis. But Meningitis has helped me in getting more positive. It brought me more close to God, my family and friends. I think it was the turning point of my life for better. But yes I believe that people with Meningitis should take very special care of their diet during their healing process. Today I am a successful software engineer, pregnant presently and in perfectly good health. Be positive and stay happy :-)

Posted on 09 December 2013

Comment by Jackiee Conklin

I was born in 1986 northern Michigan. at 6 weeks of age of was admitted into the hospital for 2 months with spinal meningitis my story is still being pieced together after 4 years of being sick and the doctors not knowing why or blaming it on my meningitis. i have had seizures my whole life, thirst problem, amnesia, tremors, chest pain, loss of feeling in arms fingers legs and toes, loss of balance up stairs and down. and terrible pressure headaches that cause me to louse my vision. i have other complications but would love to hear from others if interested e-mail me jconkl07@baker.edu good luck all

Posted on 06 December 2013

Comment by John Jason Allen

Hello all, I had bacterial spinal meningitis when I was born. My mother has told me that I was within an hour of death had the Doctor not diagnosed the condition. My experience has been very different from most I've read on this site. I had a very normal childhood, had no learning issues and never had the balance issues that seem to be so prominent among these posts. I was an all state athlete. I even won a state championship in wrestling (which is a sport that requires a great deal of balance and the ability to focus) However, The last 7-8 years have been hell. I've had multiple back surgeries, nerve damage caused by a bone spur that was the size of my thumb, Bone tumors removed from my ankles, and bone spurs in my back that have impacted nerves. I also have violent tremors in my legs. I blew out my knee my senior year of high school, and have had issues with it not healing properly. It hasn't caused many problems til now, but I was recently told it needs to be replaced. I'm 35 now. During one of my recent back surgeries, my legs began to tremor while I was under anesthesia. So, I was sent to a Neurologist. They found a white spot on my brain, but said it could be just a normal abnormality. My whole life I have also had dental problems. I have always brushed and maintained my teeth, but had constant cavities. I was told when I was younger, that I had irregular enamel. Has anyone else had issues with bone spurs or bone tumors, severe tremors or dental issues. If so, has it been linked to your past history of meningitis?

Posted on 28 November 2013

Comment by Anuj Jaju

My 21 year old female friend is also suffering from TB meningitis. She was in coma when she was diagnosed but since then she's recovering...Have so many issues like stiffness in left leg and right arm, bowel and bladder incontinence, poor attention, very weak even to hold anything...Anyone can help me to help her for better recovery...What things helped you the most please tell me here fb.com/anujmaheshwari.ksj
I'll be pleased to listen from you....
Regards,
Anuj

Posted on 25 November 2013

Comment by spaccio woolrich

Oh dear, those look so good, I’m afraid I’d eat them all in on sitting!

Posted on 25 November 2013

Comment by J J

My meningitis was misdiagnosed as influenza by four doctors on separate occasions when I was about 8 months old.
I was eventually placed in intensive care, suffered from night terrors for years, and then basic nightmares almost every night until I was about 8 or 9. I used to be afraid of going to sleep because I knew they'd come up whether I liked it or not.
I have since had serious learning difficulties (making school absolute hell), migraine headaches, depression, anxiety, extreme sensitivity, extreme changes in mood, difficulty relating to other people, difficulty holding down jobs. I used to use drugs heavily because they'd numb me down or make me feel good.
I've always tried my best to get on course and try to enjoy life. I've quit drugs, educated myself, earned multiple qualifications, but it's still really hard, and in a way, it seems to be getting worse as I get older.
The worst thing about it is that people are so apathetic about it. Even members of my family are quicker to attribute my sometimes bizarre and phobic behavior to being idiosyncratic rather than it being in any way related to a childhood trauma, (on the grounds that I was too young to remember the experience).
As a result, I'm expected by most people to just be a normal functioning person, and that my difficulties in life are simply neurotic. I'm so sick of it. In all honesty, I wish the infection had just killed me off in the first place.

Posted on 23 November 2013

Comment by Steven Stewart

I had bacterial meningitis at the age of 12 (in 1961). In those days the doctor came to the house and diagnosed me. Evidently he wanted to put me in the hospital since I had an extremely high fever. Long story short I recovered even though I have memories of drifting in and out of consciousness. Now 65 I was diagnosed with Lupus in 1994. I've had kidney problems, high blood pressure, irregular heartbeat, and RA. Anyone else with Lupus that had meningitis?

Posted on 23 November 2013

Comment by Cynthia Norman

I contracted meningitis when I was 20. I am now 53. (No clue what type of meningitis as I was basically unconscious for a week or more and my mom isn't sure what type the Dr. said I had) I was very surprised to learn there are long term effects from this disease. When I read the list of possible issues I was amazed. I have walked around thinking I was crazy or a hypochondriac. Good to know that there is a possible root cause for what I have experienced. Even if there is nothing that can be done, it is good to finally know its not 'all in my head'. Thanks to everyone for sharing their experiences.

Posted on 19 November 2013

Comment by Kenneth Wise

I thought I was going crazy I was in the hosptial about a year and half ago with meningitis I was fine for awhile but now I seem to be getting worse and the have run xrays and lab work ct scan and everything is normal but I know it is not I feel something very wrong I am in constent pain my upper right thigh goes completely numb just walking a couple of blocks and that is if I have the energy. I don't know what to do anymore.

Posted on 17 November 2013

Comment by Lauren Johnson

My 2 year old son contracted Meningicocal septicimia on Christmas day 2012, thankfully he survived even though we was told he only has 2 hours to live. I thought he would go back to his normal self after the illness, but I was so wrong. His speech never returned and nearly a year on at nearly 3 years old he can still only say approx. 10 words, his behaviour has to be the worst out of everything, he is violent, he doesn't understand danger, he doesn't process what you tell him its just awful. He is not at all the same child we had before he got poorly. He is currently waiting for a detailed brain scan, a brain activity test and an immune system test. I think the meningitis itself is the scariest but the after affects of it are so hard aswell! X

Posted on 16 November 2013

Comment by yanyan Indin

My name is yanyan. I am 25 y/o now. I suffered meningitis when I was 2 years Old but thank God I survived. I am now a Licensed Teacher Here in the Philippines teaching and Inspiring others not to lose hope.

Posted on 15 November 2013

Comment by Lynnsey Cathern Schaaf

Hi i also had spinal meningitis at the age of 2 1983 they didnt know what was wrong with me i have no memory of it only the stories i was told i had a high fever chills wouldnt drink anything if my mother had waited one more hour to get me to the hospital i would have died they placed me in a glass room enduced a coma my family could only touch me through gloves in the plastic part of the wall ( built in gloves) i had needles all over my body for allergy tests had a spinal tap i was severally ill from it. Now im 32 i have rls, migranes, my feet go numb and tingle especially my right side, i have a hump on my lower neck, sever back pain, loss of balance, dizzy spells oh god i could go on and on! Ive known theres something wrong for a while but never connected it until i read this page i found it on a whim waking up in excusiating pain this morning i couldnt understand why i do have depression rages fits all of the above it comforts me to know im not alone in this i have found people who can relate i thank everyone on this page for posting now i know what it is i just wish the pain would go away

Posted on 09 November 2013

Comment by Wendy M

Hi everyone,
It's great to read about your experiences. It's a weird feeling of happiness that we are not alone in the after effects of meningitis, but also confusion as why they happen or how to cope with them as an adult.
I also contracted Baterial Meningitis at 2 months old in 1983. The only memories I have regarding my experience are from a memoir my grandmother wrote before she passed as my parents do not share very much about it. I am so thankful for that as she was able to give me an idea of what was going of at the time and what everyone was thinking.
Luckily she visited me often in the hospital and stimulated me with singing, rocking, and stroking. I think this was a huge part of my recovery. She refused to accept the doctors diagnosis that I was deaf and she was right. After I recovered doctors came into my room and wanted to meet "the little girl who proved the CAT scan wrong."
I do relate to a lot of posts about balance, being able to focus and comprehend things, and some minor spinal aches but luckily it hasn't been anything too serious. I am now 30 years old and am very curious about the condition so it's nice to have a space where we can share these things.
I always wondered if there were effects from the meds, effects as it was during early brain development, etc.
thanks for sharing your stories :)

Posted on 03 November 2013

Comment by Sally Clifton

Hi. My daughter was diagnosed with meningitis B and septicemia when she was23 months old. She survived without any physical deficits lucky. However during the past 15 years we have witnessed some terrible emotional issues with her. My daughter is a twin and where as her brother appears to be fairly level with his emotions my lovely daughter seesaws between being caring and thoughtful to having no inhibitions about challenging anyone with no concern for her own safety. Is this a possible effect from meningitis something else(growing up)? I'm so confused and don't know how to help her.

Posted on 30 October 2013

Comment by Sajit Nair

Struck with Meningitis 2 months ago. Was in a coma when I was brought to the hospital ... My uncle who stays pretty far away had just come for a random visit and saw me lying unconscious through the keyhole of my house .... he didn't think twice of breaking the door and taking me to the hospital . Bless him !

Arrived just in time as per the doctor . Regained senses the third day of admission in the I.C.U. Being in a hospital is always worse than one can imagine.

Recovering since last month . Have a host of new concerns .... such as restricted movement in the left foot , 80% hearing loss in the left ear , Neck tilted by around 10 degrees to the right, sense of taste & smell slightly compromised ... ( Oddly , I miss that the most .. :( ... since I enjoyed cooking )..

Oh & yes .. Diplopia (Double vision ) to boot !!!


Oddly, I am not depressed and happy that nothing worse happened . My friends & parents mistake this for 'courage' & 'guts' while it is a mere acceptance that ... sometimes life doesn't go the way you plan it and all that you can do is simply try to put back the broken pieces and move on ahead.

My friends & parents have been of tremendous support and I guess that makes the difference in the end.

Such setbacks make you truly appreciate the important things in life ..... although the cost ... is a bit pricy !!!

Posted on 29 October 2013

Comment by ben pitre

When I was about 11 months old, I had a severe reaction to amox. I guess the doctors told my mom that it basically killed my immune system thus leaving me open to a wide range of infections. I ended up getting spinal meningitis, pneumonia, acute ear infections and was in a coma for a couple of weeks or so. In hospital for 2-3 months. They told her I would probably die or that I would end up a vegetable if I lived.

So fast forward 36 years and I am very curious about what the long-term effects of something like this are. I have had numerous problems that are immune system related and have developed a nerve twitch on my face that has been bothering me for a few weeks now. I also suffer from exhaustion, headaches, and some balance issues. I'm not very dramatic about these things and don't really tell people about this stuff because I don't want to seem like a hypochondriac. I just don't know who to see or what to do.

Posted on 24 October 2013

Comment by Dorothy Churchville

Hi all my fellow meningitis survivors :) My name is Dorothy and I had bacterial meningitis when I was 16 months old. I was in the hospital for a little over a month, in a coma for 3 weeks...My mom said I woke out of my coma calling for "Dot"...my mother's name is Dorothy too, and they say that while in a coma that you can hear the things that are going on around you, so the dr's believe I really latched on to my mom's voice and people around her talking to her while visiting me...

Anyway, I am now 32. I have always had a very poor time with reading comprehension and lower grades in school no matter how hard I tried and how I applied myself. I also came out with a lisp, that the Dr's also told my parents that the meningitis effected my speech...I also have balance problems, which have only gotten worse throughout the years. My long term memory however isn't one that is suffering it is my short term. I actually can remember snip its of the hospital crib and dome that was over my crib when I was in the hospital being treated for meningitis. I can remember back to being almost 2 which a lot of people don't believe me, but when my parents seem shocked that some detail I'm able to go into of the house we were living in at that time they can verify I'm not making this stuff up. The weirdest is though I can't remember yesterday or the day before all that well :( ugh..i can't stand it, I never contributed it to my meningitis as a baby, but after reading some things about meningitis, maybe? It would make sense with how my reading comprehension suffers.

I do want to tell everyone and ask opinions on this, and to see if anyone else has/had similar things happen with them. I, after having meningitis about 1 year later, also remember being visited by an angel, I was probably around 3ish and it is so vivid to me and my mom can remember the morning I woke up and told her how I saw the beautiful angel out in our hallway as I walked through to use the bathroom and my older brother does remember that night when I tried waking him to come see but he refused to and kept telling me to go back to bed. At that time I didn't try waking my parents because the angel was in front of their bedroom door so I was too scared to walk up to it but I so badly wanted everyone else to see. Ever since then I've had on and off things occur to me, where I feel a presence or catch a glimpse out of the corner of my eye of someone standing next to me. A LOT of people think I'm crazy when I share this story, my own husband thinks I'm very creative, but it is the truth, so I don't care how crazy it sounds I'm going to keep on telling the truth. Anyway, not only that but i have also for the past 5 years have been having more and more dreams they have been occurring more significantly this past year, where they are very vivid and very realistic to what is going on today. I have also had nonstop dreams of my 2 grandparents who passed away 8 years ago visiting me to tell me things, or letting me know they see and have met my new sister-in-law and their new great grand daughter who they weren't around to see be born. I even have dreams that seem to be of future world events... It's just weird to me. I wonder if there is any link to the effects meningitis had on my brain and these sorts of dreams. I would love to know... I'm not quick to say I see Angels, Dead people, or have premonitions, because I think there may be a connection to what impact my brain went through during meningitis, but I can tell you all these things have occurred to me and I'm trying to link the two. Has anyone else had anything like this happen with them as well?

Posted on 23 October 2013

Comment by Alison Robson

I'm a 42 year old female who contracted Meningitis 15 years ago - similar circumstances to most of you, flu like symptoms, went to the Dr who told me I had flu and a throat infection and told me to go away and take paracetamol - 6 hours later I was in intensive care! After 3 weeks in hospital I returned home to a life that changed for ever. During the rehab they found I had 'irregular brainwaves' - so I forget things - words, where I've put things, what I was doing etc. As you'd expect I've just got on with it as there seems very little sympathy out there when I did complain I'd get people saying 'oh I'm like that too' - so just ended up feeling silly. As time has gone on the issues I had immediately after which died down for a time - ie ear problems, movement and balance problems have also started to become more intense - Memory retention, tintinus, and problems in my wrists and knees, balance/dizzy. I thought that this was just me and I was getting old, but reading the comments above I'm relieved to find that I'm actually not alone in this.

Posted on 22 October 2013

Comment by Bethany Miller

CJ,
This sounds so exciting. I appreciate all the time and effort you are putting into this. I can't wait til the day when we can all hopefully get a diagnosis and help. Let me know what I can do. Thanks.

Posted on 22 October 2013

Comment by Chas Jay

Ok gang, this is CJ. Here is the scoop so far. I have been digging around in my old hospital records (Johns Hopkins 1967) and conducting some background research.

There does seem to be a syndrome out there with these common dominators.
1. History of meningitis, often as a child, where they was apparently a full or near recovery (at least from a medical standpoint).
2. Years or even decades later a cluster of symptoms develop including
A. Balance problems
B. MS like symptoms (often people have been worked up for MS and found to be negative)
C. Bladder problems
D. Memory loss or problems
E. Numbness in extremities
F. Tinnitus (ear ringing)
G. Head ache not attributable to migraine, sinus, etc)
H. Sleeping problems
I. Visual perceptual and processing problems (the eyes themselves may be fine) that does not improve with ordinary eyeglass or contact lens wear
J. Anxiety and depression
K. Muscle tone and spasticity issues or unexplained muscle weakness
L. Constant ‘low energy’ feelings without obvious causes (sleep deprivation, medical problems, constantly changing shifts etc)
M. Others
3. No doctor seems to be able to explain all these symptoms
4. MRI is essentially normal, with perhaps some ‘scaring’ the disease left behind.
5. Frustration! They are aware that they should be performing better.

I know that not everyone will have all the symptoms and experiences and there are other symptoms reported, but these seem to me to be the common threads. Let me know what you all think.
So now, what is to be done about this issue? Let’s attack this in three Phases.

PHASE I. Convince the medical establishment that this is a real issue. Conduct research and publish results. Establish the diagnoses of Post Meningitis Syndrome (PMD) with a IC9 code. Establish epidemiology and prognosis.
PHASE II. Assuming PMD is a real issue what steps can be done to reduce or eliminate the suffering that people with PMD experience?
PHASE II. Is there anything we can do when the children are hospitalized or discharged that can prevent or reduce the effects of this syndrome later in life?

I have started the very beginning of stage 1. If I can figure out how to do this I will setup a “Survey Monkey” questionnaire for us all to fill out as we please. There will be no names or personal identification information will be asked. Although this is not a scientific poll it should get some attention.

That is it for now. More to come

CJ

Posted on 19 October 2013

Comment by Chris Covington

I contracted spinal meningitis when I was 10 years old. I am now 48 years old and can say that my 14 day stay in the hospital changed me for good. I have always said that the child that walked into the hospital wasn't the same one that walked out afterward, which was true. Within a year after being released, I noticed changes in myself. I was too young to know at the time. But I was suffering from PTSD. I began having panic attacks during the day and night terrors at night. Back in the day there wasn't a good understanding of these conditions as they have now, that compounded with the fact that I was a child and couldn't grasp or explain what was happening to me.

By age 14, I was dealing with severe depression and anxiety. Within a few years I discovered alcohol and latched onto it because it was the only thing that alleviated my inner pain. Little did I know the consequences of it. To this day I still battle with alcoholism and I know because of its powerful roots that its something that I will never be free from. I have been on numerous anti-depressants over the years that have helped in a minimal way, but I believe that if I could have gotten the proper help as a child, I'd be a much better version of what I am today.

If any parent reads this that has a child that is going/or recently gone through this, do NOT wait to get them help, not only on a psychological level, but physically as well (such as getting them an MRI) to ensure brain health.

Posted on 17 October 2013

Comment by Tracy Atkinson

My little girl Michaela had Meningitis bacterial at the age of 5 she has balance problems and often complains of aching lims feet and knees she says she feels like her leg is going to drop of and its floppy : she also suffers memory and concentration problems, she struggles to take in all the information at school and is upset when she comes home, she has also had bladder problems gets very upset when can't wee it all out and is complaining of headaches also every other day - I try to get the hospital consultant to see her about this and I feel passed from pillar to post I haven't had an MRI scan offered I wonder if I should request one ? I feel the consultant says it was caught early and even the ears probably not related to the meningitis as her hearing was effected after they treated her for glue ear and fitted grommets and then gave her aids which she will not wear as she is now 10 I get no help benefit wise and I am on a low income I have applied for help but it is always turned down even though she has sleeping problems and is not independent and confident to even go out on her own :((( and I am in constant fear she will contract the disease again

Posted on 17 October 2013

Comment by Lou Perez

After reading everyone's stories I don't feel so alone.. I contacted meningococcal meningitis in 1984 when I was 2 yrs old.. Although, I'm not to clear as to what events took place at that time I can only go by what my parents have said. I started out with a high fever and complaining of pain through my legs and what looked like chicken pox spots all over me. At this point my parents then took me to a nearby local hospital to be seen. The hospital where I was being treated is very small and was unable to help with my issues so I was sent up to a bigger hospital for just children. I was there for about an hour or so before they finally realized what I had and started quick on the treatments. During all this time of waiting for labs to come back, I suffered with what seemed like "chicken pox" popping through out my legs and one arm. (Kinda like my flesh was just eating itself.)Although, I did have a skin graph that didn't seem to help much.. I am missing 3 layers of skin on my left leg, with scars on both legs and scars on my left arm.. I know I am lucky to have survived this deadly illness, yet I feel so insecure with my body.. I haven't met anyone with these types of scars yet thou.. Now, that I am 29 y/o I'm suffering with more frequent back aches. I wonder if this has something to do with it.

Posted on 14 October 2013

Comment by Bethany Miller

I went back to the neurologist today to get the results of my MRI. He said that my brain looked normal except that my fourth ventricle, at the base of my brain, is swollen. He said it is most likely from having meningitis as a kid. CJ, I hope that you can get some help at Johns Hopkins. Let us know if there is anything we can do to help.

Posted on 14 October 2013

Comment by Lee Jennings

I was a man of 49 who had the fitness of a guy half my age when I contracted Listeria Meningitis (Bacterial). Due to the local hospital not having diagnosed the condition, I was shipped off to a University hospital 2 weeks after I first had symtoms. I was on the brink of death when they realised what it was and started me on Emoccocyline Anti-Biotics. I was almost comatose for 3 days, but eventually I came round.
After 119 days in hospital they finally discharged me.

That was Feb 29th 2012.

18 months later my left shoulder arm and hand do not work properly due to high muscletone and spaticity. My left hip is very weak and my left leg feels like its one solid piece when I walk (the kneee doesn't want to bend naturally) so I tend to limp. My balance is not 100% and I occassionally get spasms in my left leg.

I feel like a man of 80 yet I am 51.

I am also tired all the time and have no drive to do anything.

Any of this sound familiar?

Lee

Posted on 27 September 2013

Comment by Chas Jay

Hello, This is CJ from a few posts back. I was finally able to track down my medical records from Johns Hopkins where I was hospitalized for H-Flu meningitis in 1968. Since then I have made some contacts at NIH (National Institute for Health) to see if they would like to study what I preliminary call "Post Meningitis Syndrome". There seems to be at least some interest. I'll keep you all posted.

I really believe that what we are experiencing is real.


CJ

Posted on 24 September 2013

Comment by Phillip Fernald

I contracted the deadly disease in 1977 at the age of 10..I was so sick i could not move and began to lose my vision my, parents noticed red dots on me and immediately took me to the hospital..Back then in Maine we had no lab so they sent my blood off to Boston. Luckily the Doctor at the ER had seen these symptoms before and told my parents I could not afford to wait for the labs to come back in 48 hours, because I would be dead!! They started me on 2 different kinds of antibiotics and stayed in the hospital for 10 days...

By the time i was 12 my grades had stated to go down hill,I started to have behavioral issues and I was depressed and having insomnia and what is now known as restless leg syndrome..I began having head aches and horrible muscle and joint pains...My doctors said it was just growing pains and I would be fine..

I was not fine It got so bad I thought I was going insane and turned to drugs at 14 and quit school at 17 ...Now at the age of 46 I have dealt with every illness known to man except HIV...I had chicken pox at 28 and almost died..I contracted CMV (Cytomeglovirus) at 37 and have been been diagnosed with arthritis and fibromyalgia, dgenerative disc disease , PTSD depression, night terrors, severe anxiety disorder,nightmares every night since I was 12, IBS Gerd, aciid reflux, carpull tunnel, short term memory loss , scoliosis stress related anaphylaxsis and have had all these problems as far back as I can remember, all the cartilage in my joints are gone and for the last 10 yrs have been on every medication available way too many to list,...The only thing that helps is what I am currently on now..Oxycodone and Zanax in very high doses...I have been fighting to stay alive for the last 34 yrs and fighting my SSDI for the last 8 yrs...I go to 2 different therapists every week and have tried every treatment and physical therapy there is..Nothing worked, like I said, high doses of pain meds and anti anxiety meds have saved my life..Mental and emotional therapy as well has kept me from killing myself many times, as well as my love for the lord and my children.. This site has made me want to find more of u that have my same issues and would like to put together a support group..So anyone who wants to discuss their issues and concerns with me where I have been dealing with this for 30+ yrs I might be of some help to u...Or if nothing else just to listen to your story... Email me at umagolfer@gmail.com Thank u all for sharing your stories and the tortured lives that we live....

Posted on 20 September 2013

Comment by Bethany Miller

I finally found a doctor who will run an MRI. I did the MRI 2 weeks ago. I am praying it will show something.

Posted on 09 September 2013

Comment by lee smith

my heart goes out to you all -- so much suffering and pain makes my heart ache, but also makes me realize how astonishingly lucky i am. i had meningoencephalitis when I was 3 (I'm 55 now) and eventhough I had to learn to walk again, am deaf in one ear, can't perform anything but the simplest math, regularly have very vivid hallucinations, haven't any sense of direction and didn't know I was dyslexic or ADD till I was in my late 30s, I'm a professor, an artist and have lived a blessed life. one of the most important things for me is sharing this with my students -- educating them toward compassion, empathy and inclusion for others who may be struggling mightily with issues seen and unseen. go bless you all.

Posted on 06 September 2013

Comment by andrew craig

I also had meningitis in 1980 and will soon be turning 50. All the symptoms you describe are far too familiar to me , with new ones appearing (and occasionally) disappearing in waves. I have seen dozens of Dr.s and have had a dozen different diagnosis from fibromialga to parkinsons to hypochondria. Although they disagree what is wrong they all agree somethings wrong and my condition has degraded to the point I can no longer work and have been granted a disability pension. At this point I have no doubt my condition will only get worse and so I make the best of the time I have. After reading all the posts in this discussion I must admit I feel some relief. It is quite frustrating when even the Dr.s don't know whats wrong , so to hear so many similar stories to my own gives me comfort in as much as I now have an answer to a problem that has been so elusive.

Posted on 29 August 2013

Comment by Holly B

I had meningitis in 1988 when I was 5 or 6 months old. I am now 25 and a college grad. Up until I was 7 years old I experienced seizures. I cannot move my toes on my left foot and have some minimum hearing loss. I think I am pretty lucky as I had brain surgery to remove the fluid from my brain and my mom was told I probably wouldn't survive. I think my memory is okay for the most part.

Posted on 23 August 2013

Comment by Brittany Braden

I'm 21 years old and I've been diagnosed with viral meningitis twice. The first time I was 2 years old. I temporarily lost function in my legs. I had to learn to crawl and walk again. I was diagnosed again at 10. I woke up one morning and had to crawl into my parents room because I could not walk because the pain was so excruciating. I also had a really bad migraine. I was taken to the ER and after many tests the doctors determined it was meningitis but could not tell if it was viral or bacterial. I spent a month in the hospital. It was the most scary thing I have ever experienced. Every now and then I have back pain and migraines. Over the past couple of years, my hands would shake, sometimes so bad I couldn't drink out of a glass without a straw. I didn't think much of it. I have a great aunt with Parkinson's, which is the most severe kind of Tremors, then last year I started losing my balance really bad and my hearing goes in and out. I was then diagnosed with Ménière's disease. This past week I started having severe lower back pain and went straight to the doctor for fear that I once again contracted meningitis. I was told I pulled four ligaments in my back and that it would heal in a few months. I never realized this all possibly stemmed from having meningitis. It is both scary and a relief at the same time, knowing I'm not alone. I rarely ever feel great but I have more good days than bad days. God bless you all.

Posted on 19 August 2013

Comment by Brandon

Hi, my name is Brandon and I got Bacterial Meningitis when I was 3 months old in 1974. I am 38 now. My spinal cord is a little bit crooked because of the spinal tap. Also my memory is not nearly as good as it should be. I am the only guy on both sides of my family that is less than 6 feet tall. I have a super great immune system, which is probably genetic and other things. My brother and sister were both straight A students in school and most of my family are like that, however, I have always struggled and only graduated with a 2.1 GPA. When I studied Geometry in High School, I studied very hard and had a test every week which I got an A on, however when I took the Final exam, I could only remember the most recent things and I failed the exam. If I don't use people's names all the time then I won't remember your name after 3 or 4 months even if I spent a lot of time with you for what ever reason. I am slower at learning than most people in my family. I can learn well though, but my memory makes it impossible to retain for very long. Other people seem to grasp common sense idea's better than I do too.

Posted on 15 August 2013

Comment by Gill Bird

I have been reading some of these comments and now think of myself as being incredibly lucky. When I was six, ( I am now 66) I had viral meningitis very badly. I recovered and was medicated with pheno barbitone for several years because my temperature would soar with just a common cold. After I had my first child at the age of 25 my right hand started to shake. It was diagnosed as an intentioonal tremor triggered by the trauma of giving birth and originally caused by having meningitis.
I am now nearly 67 and am dealing with the tremor by drinking through straws,covered cups and trying to eat and drink healthily. Strangely the tremors recede a little when I drink alcohol! I cannot control the tremors but am coping with the great help and understanding of my friends.
I would be interested to hear of any similar accounts by folk of my own age.

Posted on 10 August 2013

Comment by Yolanda Koehler

My name is Yolanda and I am now 55. I had Bacterial Meningitis and sepsis when I was 6 and was given 3 hours to live when I arrived at the hospital. I remember my vision going in and out and hearing sound was irritating. I remember all the spinal taps, but I was in a coma for a few days. I could hear, especially when the lab man was coming, By God's Grace I got to go home in a week. My body was flushed with Sulfa Drug until I became allergic then they started PCN. As I have gotten older I have many problems. I catch everything that goes around, I have Fibromyalgia ( I think Lupus) but they haven't stuck me enough to prove that), my vision has gotten bad, my memory is bad and has been all my life. I know what I want to say but I can't pull it from the memory, my body has constant pain and I'm always tired. When I called the CDC here in the USA, they tell me research has never been done on a follow up! Gee, let me just guess at what it has done to me! Just hang in there, you will find a way to cope. It can be very frustrating but you can get around the problems!

Posted on 08 August 2013

Comment by Angela

I was diagnosed in the fall of 1974 with H Influenza Meningitis, I was 1.5. In early winter of 1975, I was re-diagnosed. In March of 1975, I underwent brain surgery--performed by a Doctor that had merely assisted in a similar surgery on a 70 yr old man. I am now 40, healthy, with no lasting side effects. Any new illness I have are a result of a lovely genetic lottery, that I have apparently won. (and there are many but none b/c of the Meningitis.) The only issues from the surgery are the scars--muscle from my leg put in my head & my inability to taste or smell. I have lived a full life, my parents never held me back. Aside from setting off detectors in airports, no one knows my story unless I share. And I thank the Doctors of Pittsburgh Childrens Hospital for saving my life.

Posted on 07 August 2013

Comment by Marie Hogan Butler

My son contracted meningacoccyl meningitis and septemia on St Patricks Day 1995, He was 3 and half months old at the time, before doctors even done lumber puncture they got him to icu and started pumping him with pencillian, he was in coma for days and we were very lucky that he lost no limbs, hearing or sight. He is now 18, but has dropped out of school ,he could never sit and concentrate for long periods has no real ambitions, and if we are talking about things that happened when he was younger he always says he does not remember this or that. he can be very moody but I still think he will find his way in time and do not put to much pressure on him (at the moment anyway). Thanks to blogs here I seem to understand a bit more and will get family to read about this as I have been told I make too many excuses for him. He has seen a therpist when he was about 14 due to behaviour in school but totally ruled out it having anything to do with Men M or sep. as a baby, I really feel I have got some answers here and hope future will be bright for him.

Posted on 01 August 2013

Comment by Kate SN

Hey there,

I’m Kate, I’m 30 and from the UK. I had Bacterial Meningo-encephalitis and pneumonia in September 2012. It was pretty severe (it started with numbness travelling down one side of my body (I had no other symptoms before this – I was physically fit and swimming at the time it came on), loss of feeling in my foot followed shortly by headaches, loss of speech and then paralysis, I was whizzed off to hospital in an ambulance (I can’t remember the journey but apparently I was conscious and making a nuisance of myself) put into an artificial coma on life support for 2 days) however I was out of hospital within a week.

The worst bit was recovering at home; they hadn’t warned me about pain after the lumbar puncture (which they did that while I was knocked out) and the long-term severe fatigue. I was only signed off for a month to start with. I started a phased return to work in December 2012 which was unsuccessful as I was still suffering with fatigue and I couldn’t concentrate.
I restarted a phased return in January 2013 (starting with only half a day a week and building up my time gradually, I have a very supportive boss!) and was back to full time employment (39 hours a week) by April 2013.

In terms of my symptoms now, which is 11 months on; I get numbness down the left hand side of my body, including my face and sensory bursts. I’ve been to the neuro consultant and he said it was to be expected and he wouldn’t expect me to be back to normal until 2 years after I came out of hospital. Headaches. Tiredness. I still find it difficult to keep up with busy situations (lots of talking and conversations crossing over each other are the worst!). Other than that I got off lightly! It was caught quickly and I was very lucky.

I thought I’d share some words of advice I was given at the beginning as it’s really helped at the time and I still use them now:

- Understand that you may never be the person you were before you got sick.

- Don’t compare yourself to how you were before you got sick. You have changed and you’re building everything back up.

- Set targets (my first was to walk to the end of the road without needing a break) and celebrate when you reach them.

- Don’t sit and fester. It makes you feel dreadful and is really bad for you physically. I had a lot of muscle wastage from not moving for months – try to keep moving and watch your posture. I was in physio from October 2012 to May 2013 trying to build all my muscles back up in my neck, shoulders and back. It’s a pain and can be avoided. Ask your GP for a referral early on.

- Try and have a change of scene from time to time. Initially this was overwhelming but it helps with the misery of not doing much!

- It ok to tell people you can’t do things and to ask for help. You’re body has had a massive shock and doesn’t function the way it did before.

Good luck on your recovery and remember to stay positive. If you have symptoms that will never go away don’t see it as a hindrance, see it as a new chapter and find a way to live with it.

K

Posted on 31 July 2013

Comment by Shawn Tapley

After reading the top few posts, I feel like I want to cry. I had no idea that there were more of ..me out there. I had contracted the kind that is non-spreadable if that makes sense. I awoke one morning to flu like symptoms. I did the lay in bed thing, lots of water etc... This went on for about 4 days..I think..lol..Memory is so jacked. Anyhow after hearing my wife harp on me to go see a doctor for a few days (men in my family usually dont..lol) I couldnt handle the pain. I passed out several times on the way to the driveway. Once I got to the hospital it took only a few minutes before the nurses got tired of hearing me moan and groan. They checked my vitals and were alarmed at my temp...106-108 I think. They put me in a room and after a visit from the Dr, they pulled spinal fluid. Apparently this is a painful process, but I was so out of it that my wife said I barely noticed. They finally gave me morphine for the pain (which we found out that I am somewhat allergic to and only caused my head to hurt worse) and after a short while my wife was asked to leave and they quarantined me. After a couple days they told me that I wasnt contagious and that I had contracted meningitis. The Dr said that had I waited another 4-6 hours it would be the coroner not him that I would be visiting. After a few days they sent me by ambulance to another hospital in which I stayed for another 2 weeks. It sucked. When I had finally been released with a pic line in my right arm I went home and seemed to be recovering. After the pic line came (2 weeks) I kept smelling sulfur every time I sneezed or coughed. I mentioned this to my Dr who immediately sent me for a CAT scan. The meningitis had apparently eaten a hole behind my left eye socket and into a sinus cavity. Emergency surgery. I recovered and went back to work where as time went on I continued to "deteriorate". Migraine like headaches, hearing trouble, trouble forming speech, vision problems that seemed to come and go. The worse is the memory loss. Its not as if I cant remember anything, its that my memory seems muddied. There are events or things that people tell me I should remember and can't, or I mix memories together..If that makes sense. Depression followed and I eventually lost my job for missing too many days of work. I am now thinking of trying to get some kind of disability status from it ,but have no idea what to do, or even if these issues were related to the meningitis. The stories I have read on here have opened my eyes a bit and makes me angry that others (including Dr's) seem to over look the issues that we are left with. Thank you all again for not just pulling through, but living on afterwards.

Posted on 31 July 2013

Comment by Mark Nauman

To Karen Moore: It sounds like we were separated at birth. I too am 60 and my life is a reflections of what you describe. I'm sorry, none of us should go through this.

I'm a government professional and this illness causes me so much difficulty. To be speaking before a group or in a meeting and suddenly forget the words I was about to speak is humiliating. Moving like a man 30 years my senior is hard to face each day. As I write this, my neck is so stiff, like the spine is soldifying and the pain in my head and neck is approaching unbearable. Retinal infarctions are becoming more frequent. Being told I have gout, when I'm a none drinking vegetarian is hard to swallow. Nobody knows what this is like and people treat me like I'm a hypochondriac. Enough complaining, it's nice though to be able to say this to people who know what I'm talking about. Good fortune to all of you. Mark

Posted on 31 July 2013

Comment by Mark Nauman

On September 12, 2000 I started feeling bad around 5pm, by 1am the following morning I was crawling on hands and knees into the emergency room with blinding pain everwhere and a fever of 106. IV antibiotics brought my fever below 101, I was sent home. I could not get out of bed and was in constant pain and after about two weeks I received a call around 10 at night from my doctor telling me I had to get in to see him forst thing in the am. The test results from the hospital had just got to him and he was surprised to find I was still alive. I lost six months of work and the final diagnosis was TBM. I'm nearly deaf in my right ear, have liver damage, trouble with cognative processes, and live with constant pain, Hands, legs, and feet numb. There are days when I just can't function. As I get older the problems get worse. My neurologist is an ass and I can't get any help. I found this blog and I can't believe how many of you are in the same boat. I'm so sorry for all of you and for those who have lost loved ones. I am so thankful for the good days as they are few and far between. My best to all of you. Mark

Posted on 29 July 2013

Comment by Rosemary

Hi I'm 28years I have two kids2 n 7 both csections, well I was 1 1/2 my mom found out I had T.B. meningitis in the spine , I have every kind of symptoms everyone on here is mentioned Drs. tell me its cause I'm overweight, migraines, I don't eat right, water etc.. Etc.... But then they tell me I'm healthy,i don't know what to think, and I'm in sooo much pain. I don't complain about cause no one believes me, they just I'm tired or lazy or sick or allergies! It sucks

Posted on 28 July 2013

Comment by Abraham Hernandez

Hi I had meningitis 2 years ago it started out like everyone else I was working then I felt really dizzy and after I got a huge headache and started throwing up 3 days later I lost my hearing completely and that's when they finally hospitalized me for 2 weeks.. I had bacterial meningitis. Know am 20 and I had 2 surgerys one to close my left ear the other one was to get a cochlea implant witch am really thankful for cause I could know hear not so good but I could hear everything though and I been wearing my implant for less than a year so i still a long way ahead of me !! But I think that what people say it could all be control if u really want to if u think something wrong with you then something will be wring but if you think positive then positive things will happen. I had bad eye vision but it got back to normal one day that I woked up I was back to my normal hearing and I have bad balance but that's do that when you have tinnitus or hearing loss you will also loose balance but that could be fixed how just by adjusting to the new balance but don't worry almost everyone that gets meningitis looses hearing and if u have really bad hearing I would recommend you to get a ct scan cause meningitis leaves scars that will forever stay with you like me a bone grew in my cochlea and that's how I lost my hearing and my good balance but am young am only 20 but honestly I thinki got smarter the only thing that SUcksis that I get sick easy or get cyst but I believe by eating healthy I should get better and exercise is a really fantastical method to get your life back :)

Posted on 20 July 2013

Comment by Vashtianna Green

I think I am in a state of shock after spending most of my day researching an illness I had as a child at the tender age of 5 (Bacterial Meningitis). After reading such repetitive stories I have now realized that I actually belong to what seems to be a secret society of survivors that clearly have similar symptoms of this disease, or that has lost someone that has slowly been consumed by this illness. My thinking processes and day to day ability's surrounding my own mind have been near impossible to grasp.

I have for the past 3 years known something is not quite right with the way my mind processes information and have never understood the reasons behind the numbing of my lower legs and hands or cramping in my finger/toes and other joints in my body. I am now almost 29 yet still feel at times as vulnerable as the day I fell ill with BM. I feel I am in a constant battle with the fatigue of the not ever knowing what was truly wrong even though I have always known there has always been alot that`s not right. To be honest this is the only time throughout life after BM that I have stumbled upon such a site, I have only ever knew there was something seriously wrong and and looking for answers recently.

I have always been a very confident individual who has never had a problem meeting new people and love meeting new potential friends but have always found it hard to find people that are on the same page. Now I know why.

This is sad because after reading other post`s I now have to also accept that the general difficulties I face on a day to day basis are something I will no doubt have to deal with for the rest of my life. Its going to be a uphill struggle but to help myself through this I am most defiantly going to think about the view looking back when I reach the top, That will be my motivation on this quest to the truth.

My thoughts will always be with all that belong to this Secret society but also with those that have lost family members or loved ones to this lethal and horrendous disease. I wish each and every one of you the strength, the power and the glory forever and ever. Amen

P.s Thank you ever so much for giving me somewhere to come where I have been able to discover that I am not suffering alone and there are others, in fact many that have gone through similar experiences it has been sincerely humbling.

Posted on 10 July 2013

Comment by Kim Finley

These posts have helped and have caused more questions for me....
My husband, who is now 48, has had quite a past of illnesses, here goes...
7 years ago he fell off a roof and severly broke his left tibia, 8" plate and 12 screws during surgery.
5 years ago he got food poisoning which then turned into septicamea which was quite severe.
4 years ago he developed viral menengitis and was hospitalized for 9 days.
Since then he has suffered with low energy levels, tingling sensations in his arms and legs, severe tiredness, bowel issues (constipation and diarahea), overall body weakness, muscle loss and the list goes on. Our Dr did some tests and discovered he had low thyroid so we assumed that was the cause of all these symptoms, he was put on eltroxin. His weakness and lack of muscle is much worse on his left side which we blamed on his broken leg for a long time but now we don't think it is the cause. Things did not improve. His symptoms go in waves, he will hit a really low spot and feel awful where he doesn't feel comfortable driving because he's so weak and then at other times he feels better, but has never been back to what he was prior to menengitis and septicemia.
Our Dr has now referred him to a neurologist (appt next week) with the thoughts that he may have neurological damage from menengitis. She also mentioned that she suspected MS at one point as well. He had an MRI about 2 years ago and nothing alarming showed up. We are hoping that the neurologist will order another MRI to check for MS and also for strokes.
I have read several comments on here from people with similair histories and symptoms and I would like to hear more from anyone who has similair stories. I find it helps to share. Also, if anyone can suggest any quesitons we should ask the specialist next week that would be helpful too.

Posted on 10 July 2013

Comment by Matthew Onita

I am so happy that I am not the only one. I have been having headaches daily for almost 2 years now. Before that, I would get horrible migraines that would send me to the hospital or urgent care. It is ridiculous. I have been going to the doctor almost every two months for almost two years, and every time got a new prescription, or a lifestyle change. Nothing worked. Just recently my doctor ordered a CT scan, and at the same time I started doing research. I contracted meningitis hours after being born, along with pneumonia, and a blood infection. It just recently dawned on me that maybe the meningitis is at blame here. I have read of people having side effects 10 years after having meningitis, so why wouldn't they show at 14 years old when they first started on a regular basis. I definitely have some new questions to be asking my doctor. Thanks everyone for the help. I'm glad I found a possible answer.

Posted on 09 July 2013

Comment by Melissa Lennan

Rather long story so bear with me lol. I was diagnosed with Viral Meningitis about 2 wks ago. It first started early june. right around June 10th of this year. The day before I got really sick ...a Tuesday, I was fine, running around doing housework, I went to the gym, and market. later on that evening my lower back began to hurt. I figured I had pulled a muscle from working out, I put a heating pad on and went to bed.

The next morning, Wednesday it was 10 times worse. I felt achy everywhere and my head was hurting. I had to have my 11 yr old daughter help pull me out of bed. so I could get her and her brother off to school. Which I did. And I was home alone with my 3 yr old. AS the day went on I began to feel worse. Chills, Nausea, Headache, the light was bothering my eyes and my back pain became even more excrutiating. it got to a point where i could not move from the couch without yelping in pain. I was home all day in a fog trying to take care of my 3 yr old, as It got worse i realized this was something more than a pulled muscle. But I was thinking flu.

My kids came home from school I just layed on couch. My husband got home thankfully earlier than usual and I told him I felt really sick. He took it lightly and kinda went about his business. Until he noticed that I was basically speaking in a weird way. I wasnt making sense. He checked my temo and it was 104. so he rushed me to ER. I could barley walk or move, they did urine thinking I had a UTi or kidney infection. But I knew what that felt like I get them all the time and this felt different. My urine came back fine, they took blood, did scan of my belly, did ultra sound, a reansvaginal ultra sound, and a pap smear. it all came back normal. which baffled them. So they decided it was a kidney infection started me on a round of AB's along with a shot in my arm of AB's the sent me home with an AB prescriotion of Cipro very high dosage and pain killers.

SO I went home, made an appt with my reg DR. for the following week. kept taking the Cipro. But I felt bad still. The pain in my back was gone. But I was still dizzy and I couldnt concentrate and the light hurt my eyes, and i still had this stupid annoying headache. By Sunday I started to feel a little less week. But everything else was still there. and I told my hsband that something was wrong. I should be feeling much better. Monday and Tuesday i was a lot less week but the headache got worse, and I was nauseas, and the light really hurt my eyes. On Wednesday evening The most excrutiating headache came along. the pain in my head and neck felt like someone was in it trying to get out. i took advils no help, then I took Oxy's and that didnt help. I cried all night. the next morning Thursday my husband got kids off to school for me and went to work he was cominghome early to take me to my DR appt. I was home with my 3 yr old. I didnt take my dose of Cipro because I thought I was having an allergic reaction to it. I could barelty make it down stairs. I got to the couch sat down. tried to get up off the couch to get to phone and I collapsed. I couldnt get up or move. the pain in my head and eyes and neck were un bearable. My husband came home and found me on the floor, Rushed me to my Dr. and my Dr. said you dont have a kidney infection. i think you may have Meningitis. I was shocked but I also knew that the symptoms fit. I had sever head and neck pain, my motor skills were off, I had sever photophobia, I was vomiting, Shaking, Couldnt make full sentences. They rushed me across street to ER. Put me in quaratine and had a specialist from the CDC come out and go over all my tests, they did a spinal and sure enough it was Meningitis. But had to confirm which it was. I was admitted put on IV with fluids and AB"s. and put into another infectios disease control room all alone. everyone had to wear masks and gloves. the next morning I got the news it was viral. I stayed in the hospital for 3 days and cam home. that was on June 22nd. But Now its July 9th and I feel weird still. Headaches, dizzines, i cant get my words out correctly, Pain in my neck and back, i get this weird tunnel vision in my right eye with pressure. and my joints hurt. I have been forgetting things alot. Ithought maybe Iwas crazy and didnt want to say anything to my anyone because i know theyd be like "Really.... your sick again"!!! I thought I was crazy but I'm so glad i found this . I did a search for the after effects of Meningitis and found this. About 2 months ago I had a staph in fection in my arm ...Twice. Nicked myself shaving and Prob entered my body thru the gym. Dr. said most likely the Staph never went away like it was thought to have and turned into Meningitis. My Dr. also told me that I would have to be careful because my Immune system is so terribly low right now because I have been on AB's for so long that I could catch anything very easily and get terribly sick again. So I've been taking Pro-biotics. hope it helps.

Posted on 08 July 2013

Comment by Ann Fewell

I was diagnosed with spinal meningitis when I was 9 months old in 1966. My dad said he found me staring straight up at the ceiling and did not respond when he tried to get me to blink. My parents don't know what caused it, but it apparently came on all of a sudden. While I recovered from it, I always wondered if some of my health problems over the years weren't a result of it. Even at a young age I had problems with coordination and would forget simple things like how to run or I would forget a friend's name. I also suffered from depression, though I wasn't diagnosed until I was 19. In my teen years I developed headache problems and that still plague me today. In my 20's, I developed back problems along with numbness and tingling that would randomly affect parts of the left side of my body. One doctor diagnosed my with Bell's Palsy even though I told him it was causing problems with my arm and leg. When I was 34 I was diagnosed with Fibromyalgia after suffering years of pain, fatigue and memory problems. A few years ago I ended up in the emergency room with what they told me was a possible TIA after experiencing weakness and tingling on the left side of my body, but when I went in with the same symptoms a few months later, they said it wasn't that, but they didn't know what it was either. All these years I suffered from all the neurologically-related problems and wondered if it could have been associated with the spinal meningitis; all these years of dealing with so many doctors who didn't really listen or didn't take me seriously or just didn't seem to care. Reading these comments by other people in my situation has literally brought tears to my eyes because I now know that I am not "imagining" things and I am not alone. I have never participated in a blog before because none has ever moved me as much as this one. Thank you so much to all of you who have shared your stories.

Posted on 01 July 2013

Comment by Shauna T

I had meningitis about 3 years ago. I got menigitis through an ear infection. Right after the fact I had issues with my memory, focus and balance. It took about 2 years for me to learn how to deal with it or for it to go away. About 9months after meningitis I had what the believe was a TIA(mini stroke) and was diagnosed with migraines. Which doctors believe non of this has to do with meningitis but I was never sick or had issues before I got sick. Well it's been three years and I'm realizing that I get annoyed and frustrated very quickly. I didn't think it had anything to do with meningitis until talking to a friend who had a brother with a head I jury that happened years ago that said ever since his injury has a temper and get frustrated ver quickly. I dont know how to deal with this! I hate feeling angry all the time. Why do the doctor not know much about meningitis? I want to be better but feel at a loss for where to go. It feels better that other people are going through the same stuff. I just feel that ever since I got sick I haven't got better but worse health wise.

Posted on 30 June 2013

Comment by Mandy Gordon

I had meningitis when I was 8 days old in 1980. Made a full recovery thanks to penicillin. I am now 32 and I have no childhood memories. I look at pictures but have no memory of the events, people, places etc. I have a great short term memory which allowed me to get straight A's throughout school but I would bomb all finals because I could not remember the early stuff. I was always worried that there was some sort of trauma in my life that my brain was blocking out but these comments have helped me see that perhaps it's from the meningitis.

Posted on 24 June 2013

Comment by Jim Fox

I am glad I found this blog as I see others with simliar hostory and symptoms. I went to the Naval Hopsital one evening with an extreme headache and fever. Now, I get migraines, but this was not migraine. The emergency room told me it was a migraine, gave me some Demoral and had me rest in the emergency room. I arrived around midnight. One nurse came in around 6 am and said he looks like he has menigitis, so they did a spinal tap. A corpsman (not a Doctor) read it and said it was negative and they sent me home for the weekend with pain killers. This weekend we were moving and I cannot describe the pain I was in. The hospital tried to contact me all weekend to tell me the results were read by a Docotr and were positive for viral meningitis. I went back on Monday, anothe spinal tap and I was admitted. Friday I received my final spinal tap and the all clear and went home.

That was in 1989. Around 2003 I started to see a nuerologist about my migraines. They did several MRI's over two years and found white spots on my brain. The did not get worse but were just there. My nuerologist said he thought I had MS. Based on all of my symptoms, muscle issues, fatigue, vision issues, etc. However he never verified it wih a spinal tap or MRI of my spine. Within the last few years my legs, joints, lower back, siatic nerve, vision and fatigue have all started up and are progressively getting worse. Now that I plan to retire from the Navy I can proceed to see what the heck is wrong. After reading these posts I see I am not alone with symptoms and history of meningitis.

What initially brought me to this blog was a search about a relationship with meningitis and MS. Not sure if there is or not. I am waiting on the VA to determine my disability and the more I can find relating the two the more I can see if my current conditions relate to the meningitis I had while on active duty.

I will keep posting as I hear more.

Thanks.

Posted on 22 June 2013

Comment by nicky

Hi everyone i had Meningococcal meningitis when i was 14 and was only given 2 hrs to live i pulled through with no memory of my child hood now i am 34 and have alot of health problems really bad memory, i loss my train of thought in middle of sentences, i have fibromyalgia , rest less leg syndrome, depression, sciatica and low levels of vitamin B12. I keep asking the doctors if any my health problems have any thing to do with meningitis but they keep saying no i would have had the problems a lot sooner than now i just fell my health seems to be getting worse as i get older........

Posted on 19 June 2013

Comment by P K Phillips

My daughter had meningitis when she was 3 weeks old, and she is almost 4 now. Something is wrong, I have 3 kids and she is "different". She is angry all the time, she crys all the time, she has no coping skills. The doctors are no help, I do no know what to do.

Posted on 18 June 2013

Comment by Lindsey

Wow, this has been very reassuring to read. Thank you to all that have posted. I know I'm not alone!! That is an amazing feeling my friend. And those who are suffering know what I'm saying... I've never really told my "story" before, but I would like to share either to help someone relate or to get advise that I am desperately wanting... My wish is that the medical doctors who see any patient- listen & be aware of symptoms & stop diagnosing people with a generic illness & sending them home without proper diagnosis & treatment!!!!!!
I just turned 30. I am a female, mother of 2. When I was 18, I was hospitalized & diagnosed with Guillain Barre Syndrome. GBS. Thought to come from the flu virus. So, got over that & fast forward to about 3-4 months ago. I found out I was 6 weeks pregnant & about 2 weeks after, got what I thought was a terrible horrible flu. Head ache. Sensitivity to light. Horrible vomiting spells. Body shakes. Pain all over from head to toe. Then I got bladder retention. I could not urinate. Went to the ER & they emptied over a liter of urine and sent me home. Said I had a UTI. The next day it happened again. Went back to ER they inserted a catheter & sent me home after confirming baby was ok & heartbeat was good. Short time later (I don't have recollection of this timeline) I knew something was not right. The tingling started & I knew that feeling very well from the GBS... So I got in the tub with my catheter in... Bad idea. I could not get out. Could not move. My kids had to call 911 & they took me to the ER where I was transferred to another hospital & they admitted me & did a spinal tap. I thought for sure it was GBS again. Wrong. Viral meningitis. They gave me fluids & tried to treat my urinary retention. Did a bunch of MRI and ct scans. After about 5 days they sent me home. This was against my will. And my entire families. I was not better. I still had a catheter. And they did another sono & told me my baby did not have a heartbeat. "And so now what".. I said. And no answers. Just pushed out of the door basically. So I go home & am bed ridden. So weak. Tired. My boyfriend says that I would get into raging fits & fight with him & accuse him of nonsense. I do not recall ANY of it! I lost a good 3 months at least. Anyway, about a week after I was discharged & no fallow up with any of the docs because they do not except Medicaid- I started cramping. And I knew I was miscarrying. Losing a baby due to this illness. So I took Tylenol & tried to sleep through it. I ended up losing a LOT of blood. My boyfriend called 911 & I was rushed into surgery & given 4 bags of blood. I lost the baby obviously & was in ICU for a day or 2 & then moved to main floor where I could finally urinate on my own & was released on 4/27/2013. I almost died. It was ridiculous & unnecessary.
Since then i have suffered from memory loss, panic attacks, depression, extreme dizziness when i lean to the right or look right, sever pain in specific parts of my body.
Now here I am on 6/18. And I am sick as a dog. Feels like I have a terrible chest cold & sinus infection & ear infections. My body hurts. Especially my back. It's hard to breathe. My chest is very heavy. I'm getting the tingling again & so I am going to the doctor as soon as they open. I have not been to sleep yet.
After reading these posts, I am going to be sure that this doctor listens to me & helps treat me properly. I am not in the mood to be brushed aside. Just because I look ok on the outside does not mean that this pain & sickness is not real on the inside!!!!!!
Thank you for reading & if any one wants to know more or has any advise, please email me to lindsey.roberson@aol.com *no spam or soliciting**
Thank you & God bless every person on here & their loved ones!!! It is so hard & I lost a few people who can't stick by me or look at this as an excuse. Support is an amazing entity to help heal.
Xo

Posted on 14 June 2013

Comment by Duncan Lambie

Pneumococcal pneumonia when i was 37 two years before that i contracted a rare Pneumonia which babies are prone to get, For the next two years i had countless chest infections bad throats colds pleurisy x 2. On the occasion i had Pneumococcal pneumonia i had visited the Doctors twice also told it was virus and would clear up by its self, two days later very poorly at home i started to cough up blood and was covered on my stomach with a deep purple rash, the doctor was called and i was rushed into hospital not realising how ill i was , Intervenes antibiotic drips set up and spent the next week battling with this illness after a week i came home but still felt vulnerable not right i knew something had changed. I returned to work after two months always so tired in so much leg pain and headaches it was undescribable i could not stand the pain iwas in i started taking stronger pain meds codeine then Oxicontin then Oramorph then Morphine sulphate my joints in my feet knees and hands back and neck became stiff very painful headaches which would last from weeks to months i am now 10 years down the road i went from a very healthy 37 year old to a very old 47 year old who constantly sleeps unable to sleep well at night as i have chronic sleep apnea. i am more like a 87 year old i dont go out anymore i don't mix in public as its the only way that would guarantee not coming down with some illness or virus, Now the Neurologist who i have seen for the last 7 years says he can not link any thing from my Pneumococcal pneumonia that relates to the physical wreck that i am today i am disabled to the extent that i can not stand walk or socialise in any way or form, i do worry what the future has installed for me i think its bleak only time will tell

Posted on 13 June 2013

Comment by Amanda Davidson

I had meningoccocal and septacaemia age three. Although apparentlywell I was always lacking stamina. After my first child was born I was diagnosed with fibromyalgia. I am totally convinced that meningitis caused a problem with chemicals in my brain such as seratonin resulting in fibromyalgia.

Posted on 13 June 2013

Comment by Clarence Tuazon

Hi all!

I am new here and I would like to share experiences with my son.

Claude, my son had bacterial meningitis just barely a month after his 2nd birthday. We stayed for over a month in the hospital, mostly in the intensive care. He had frequent seizures still now, and unfortunately he has a tracheostomy as a 'pulmonary tulae' since his cough reflex is low/poor. He also eats thru a PEG tube. I was really devastated since he was such a healthy boy, already walking and running at his age.

I really don't know what the future holds for him and us. I was to have hope but it seems to slip away sometimes. It's been almost 4years now.

God bless us.

Posted on 03 June 2013

Comment by Pam Heath

My son had bacterial meningitis at 6 months of age, he is now 24 years old. at the time of the disease, he was coded, was in a coma and had seizures, he left the hospital not using the right side of his body. through the years he had a tough time getting through school, and in high school passed out different times, after medical workups it was blamed on syncopal episodes of unknown cause, last summer he started passing out again, more recently he started having atypical typw of seizure activty, which again was diagnosed as syncopal episodes. EEG was negative, but the MRI shows atrophy of the brain, now we are going back to meningitis as the cause. what does the future hold? we do not know.

Posted on 31 May 2013

Comment by Gerrie l mikitka

I cannot believe what I am reading ,I thought all this time it was Me ! I had meningitis 2 times, 1993 AND 1997 .I was in my 40'S The Dr's did not know if it was viral or bacterial, Blood tests came back 50 50.Has anyone had it more than once?I have since been disabled with a lot of problems,

Posted on 26 May 2013

Comment by Bethany Miller

CJ,
I am very interested in any research you do at Johns Hopkins. I was a little frustrated that this board originated from the UK because I live in the States. I would love to be of any help that I can. Please keep me up to date on what you can do or find out.

Posted on 22 May 2013

Comment by Jenifer Harr-Robins

Hi, I'll be interested in what you find, CJ. I had bacterial meningitis in January 2000 at the age of 27, due to an ear infection in my cochlear-implanted ear. I was put into a coma to manage the infection. When I finally came out (barely!), the infection had wiped out virtually all of my vestibular system, and I was left with oscillopsia and tremors. It's now some 13 years later, and I'm suffering from daily headaches, migraines, and vertigo (the migraines escalated to vertigo November 2013). My neurologist has put me on medication which seems to have suppressed the vertigo attacks, but management of the headaches/migraines/pain have so far failed. I've been curious if there is some linkage to the havoc that the meningitis wrecked on my system. Please keep me posted on what you and Johns Hopkins find out.

Thanks,
Jen

Posted on 19 May 2013

Comment by Chas Jay

Stephanie,

While there is no medical entity YET called post meningitis syndrome it does appear to exist as many of these posts demonstrate. As I said before, it MAY be similar to the recognized post polio syndrome that can happen decades after a person has been disease free. The sci-fi writer Aurthur C Clark suffered from that. The proposed mechanism has been neural fatigue. Here is a web site that addresses this:
http://en.wikipedia.org/wiki/Post-polio_syndrome

I have begun contact with Johns Hopkins University (Where I was treated for meningitis in 1968). I hope to work with their infectious disease center and hopefully explore this issue and see if there really is a pattern similar to post polio syndrome only with meningitis being the culprit. Since I am an an eye doctor and published researcher myself I hope to make progress. I'll keep the group posted.

Best of luck

CJ

Posted on 19 May 2013

Comment by Stephanie Edge

HI, I've read a few of these comments (and will read the rest).

I contracted meningitis when I was about 7/8 and about the same time started suffering from severe hip pain.

I am now 24 and the pain has spread into my knees, up my back and my left shoulder (although I dislocated my left shoulder when I was about 10).

The pain is not constant but when it occurs I am unable to walk and essentially totally incapacitated (ive watched a 80 year old get off the bus quicker than I could get up!).

In the "early years" (7/8 - about 14/15) I saw what felt like every doctor in the country and I remember one of, if not the, last times I went the doctor telling me that I had stopped growing (my bones had hardened over) but that he had no idea what was causing my pain.

I have just lived with it since but as I said above it has got worse and spread.

It is only recently that my mother and I connect that the two things (my meningitis and my hip/joint issues) seemed to start at about the same age.

I notice that in some of the posts people mention joint issues.

I was wondering if anyone else had similar symptoms.

I have recently revisited the doctors due to the development in other joints and it becoming more regular. I mentioned the meningitis thing but they do not seem to have picked up on it. I have been for an MRI scan of the lower back and hips and it has come back that I am in perfect shape for my age.

To be honest I just want to know WHY I am in so much pain so much of the time. If it is an after effect of meningitis then even if there is no cure - fine! But why at such a young age am I not able to live my life "normally"?!?!

Posted on 17 May 2013

Comment by Pam Richardson

I contracted bacterial meningitis in 2012 at the age of 38 and I haven't been the same since. I went in to the doctor 3 times that week with flu like symptoms and stiff neck and I was repeatedly sent home. Finally, when I woke up one morning with a fever of 105 and vomitting I decided to call 911. I only remember about 2 hours of that ER visit.

The next thing I remember is waking up 12 days later from a drug induced coma being told I had bacterial meningitis and double pneumonia. I was SO amazingly lucky and despite needing some rehabilitation and having double vision for almost 2 months. I made it through to recover "100 percent"...although I am doubting that now.

While I had some back pain before meningitis, my lower back pain now is absolutely crippling. I can not walk long distances or stand long enough to make myself a meal. I keep renewing a temporary handicap placard, thinking it will get better and it isn't.

I have tingling and hands and feet falling asleep all the time now. And it just feels differently from before? Not like I've sat wrong or the circulation has gotten cut off, but they just tingle and go numb. Th weirdest is my lips having tingling an numbness. This never happened before The Meningitis (as me and my loved or now call it).

I am still having vision problems and I don't know if this is due to age? I am going to turn 40 this year. But since The Meningitis, I have a hard going from focusing close up on my iPhone or my knitting and then switching to trying to focus on something far away, like the TV. It's like my eyes have been dilated...

Flat out, I just haven't felt the same since The Meningitis. Maybe it's just still fresh, but I just feel angry at The Meningitis for messing with my life.

I am so glad to have found this page to know I am not alone.

Posted on 17 May 2013

Comment by Chas Jay

Paul H. I am an eye doctor from a few posts below. The pin wheel kaldiscope visual distort ions you report sounds a lot like an ocular migraine. Google "ocular migrain" with the images tab and see if what you are seeing is similar to the images. Best of luck

CJ

Posted on 15 May 2013

Comment by Paul Hammond

My Names Paul and i contracted Viral Meningitis back in 2007.
It started on a Thursday eve with a bad headache so i went to Bed. I then awoke in the early hours being sick so drove back to my mums. The following day i noticed rashes on my chest, arms and hands so my parents took me to the walk in centre. The doctor carried out the glass test which failed but still called an ambulance on a blue light as i had all the other sypmtons. Once there i was puot on a drip for awhile. I was so weak i couldnt move myself up the bed or even walk.The Doctor eventually told me i had severe tonsilitus (Even though the doctor knew id had my tonsils out when a child.) was sent home with Antibiotics. My parents had to literally carry me to the car.
I spent the Saturday in bed and then awoke with the worst ever head pain early hours. I was then rushed into Hospital again where i had the brain scan and 2 lumber injections in my spine. (i had to as the first was failed by a trainee doctor lol)
I was then kept in for three days on a MAU ward with other people as they couldnt tell what strain i had as the first doctor had given me anitbiotics. After a few days i was allowed home but had to visit daily for two weeks for medication through a drip. On the last day i had a phone call to confirm it was just the Viral strain but i had to be treated for Bacterial because of the bodge up. So as you can see i had a prettyy rough time with it and wouldnt wish it on my worst enemy.

Since then i do suffer with lower back ache every now and then. I also get headaches which always seem to be behind the eyes. Just in the last few days though ive had a really sore neck and now started getting a kalideoscope effect in my left eye for about 20 mins at a time and slightly blurry vision in my right eye which you have to wipe each time to clear.
Has anyone else had this? Im not sure if this is connected.

Thanks
Paul

Posted on 13 May 2013

Comment by Bethany Miller

I am a 35 year old mother of 2. I had bacterial meningitis just before I turned 2. I had to totally learn to walk over again. As my Mom has said, I have never been a coordinated child. Two years ago, when I was 33, I fell and broke my left ankle. At the time I had a bone scan and found out I have osteopenia. I thought this was most likely due to the fact that I am also diabetic. Last year I broke my right ankle. A different surgeon repaired that ankle. He said that my falls and breaks may be due to the meningitis I suffered as a child. Over the last year, my balance has gotten worse. I use a cane for balance. I can't stand on my own without back-pedaling so I don't fall. I suffer from depression. I get a tingling feeling in my hands. I have bladder problems. From the outside I look very organized. I make lists of what needs to be done when and where I am supposed to be when. At home is a different story. I can not plan or organize what needs to be done at home. I finally made lists of meals so that I can go grocery shopping and get what I need. I tend to forget words that I use regularly. My children, 9 and 5, are used to filling in my blanks.
My brother has muscular dystrophy, and we have run several different blood tests, with no answers. I am starting to think that maybe I need to schedule an MRI. It sounds like that may show lesions from the meningitis. Like everyone else has said, I am glad to know I am not alone.

Posted on 08 May 2013

Comment by Chas Jay

I too contracted bacterial meningitis when I was 4 years old (I am now 51). They said I made a full recovery, but now I am not so sure. I always knew that my thinking processes were different than others and my learning style is odd, for example, I cannot spell words correctly at all. I was in the 1% bracket in spelling on a standardized test. I have a history of panic attacks all through my life. Now at age 50 I began to have a whole host of medical issues such as, bladder retention (which almost killed me due to resultant kidney failure), joint pains, balance problems, numbness in my hands and feet, visual-spacial problems, sleep paralysis, fatigue and a whole host of other ‘annoyances’. I too was worked up for MS but all results were negative. In the last year I have had 3 spinal taps, 5 MRI’s, 3 CAT scans, bone marrow biopsy, neuropsychology testing, it seems like gallons of blood work, a bladder scan, bladder catheterization, and many more unpleasant procedures. I think I have been to every medical specialty except OB (I’m male) and pediatrics. As the result of all this, the conclusion was made that I suffer from post meningitis neurologic problems although this is not a recognized medical entity as of yet. There is something very similar that is a medical entity and that is post-polio syndrome, where neurological problems can show up decades later after a person is rid of the polio virus even though they showed little, if any, symptoms in the intervening years. For those that don’t know polio is a virus that also attacks the nervous system, however it has almost been wiped off the earth by a global vaccination program.
When I first starting having these issues last year I thought I might just be playing psychological games with myself, as my profession is that of an Eye Doctor (OD) and I, in part, treats patients who have traumatic brain injury (TBI), strokes, and other neurological conditions. There are very specific visual and visual perceptual problems that these people have and I found myself having very similar problems! On the side, for those out there that are having vision issues yet you went to the eye doctor and found nothing wrong, you may want to find one that specializes in TBI associated vision problems. If you “google” TBI Vision Syndrome, you can get linked up and find out more information. Here is a web site to get you started. http://nora.cc/
I know that many of us live with these constant symptoms and it is hard to have a positive outlook at times. However, some of the research on neuro-placidity (the ability of parts of the brain to compensate when another part is damaged) is very exciting and in its infancy right now. For now, I would say that our symptoms are real, we are not lazy, and think about seeing doctors that know and treat TBI patients even though we may not has sustained a head injury per say.

Posted on 08 May 2013

Comment by Cheryl Stoquert

I had viral meningitis and a horrible yeast infection at the same time. I woke up in the middle of the night with what I thought could be a migraine and the back of my neck was stiff and hurting. I got up and had my friend drive me to the hospital. I think it was the summer of 1988. When we got to the ER they sent me to get a brain scan to make sure I didn't have bleeding in my brain. That's when they told me that my brain was swelled up and my skull was, of course, not expanding with it, hence the headache. Because there was no bleeding in my brain they told me they were going to do a Spinal Tap. I was scared but made it through with no pain. A few hours later they finally said that I had meningitis but that they didn't know if I was contagious or not. So, they put me in isolation. Everyone was allowed to visit but had to wear a mask. The day after they finally came in and said that I was not contagious and that I could go home. I was 33 then. I am now 58 and was wondering why I am getting so forgetful, it's really bad and older people keep telling me I'm too young to forget everything. I also had sciatica problems from back then too. My lower back will start hurting and then a nerve gets pinched down into my hip. If I stand for long periods of time my leg eventually will not let me walk. Went to lunch at work one day and got up to go back to work and couldn't. Anyway, its good to hear that I am not the only one with the forgetfulness problem and maybe a reason for why...

Posted on 06 May 2013

Comment by Aen n

I developed bacterial meningitis when I was 6 months old (back in 1980). I was in a coma for 2 weeks and remained in the hospital for a month. 32 years later I am still feeling the effects. I have being dealing with severe migraines, learning problems, and bi polar disorder.
In terms of the learning problems, I find that sometimes when people are speaking to me it is as if they are speaking in a completely different language. This can be extremely frustrating not only for me but for my employers as well.
As for the bi polar disorder, I am the only person on both sides of my family with it. I was told that it could be a result of the meningitis, however, that doctor could not be completely sure.
As everyone else as mentioned on here, I am so relieved to see that there are others out there who know what it is like to deal with the frustrating late effects of meningitis. I have gone through the years feeling as if I was all alone. Good luck to everyone!

Posted on 04 May 2013

Comment by Danny Quire

Hi my names Danny,
Im 24 and just got out of hospital 2 days ago having been in for 5 days with viral meningitis. Unfortunately I was admitted because I overdosed trying to relieve the headache : /. I had seen 2GP's and called an ambulance and didnt get anywhere. Anyway im out now and all I can say I have so far is ringing in my ears, the odd headache and a small rash on my chest which goes with a glass being rolled over it. My sympathies to everyone with long term side effects. Its interresting to know what I might be in store for.

Posted on 03 May 2013

Comment by Julia

Hi! Im julia. I was born with bacterial meningitis. I havent had any affects besides by eardrums pop wen i yawn. i was in the medical care for 3 1/2 months wen i was born. I am 14 and have had a normal life since then. Sometimes the thought that i might go deaf someday or today is scary. But god had an angel down beside me and i am grateful that he had saved me. I know in my heart he must have a plan for me. Otherwise i wouldnt be here

Posted on 01 May 2013

Comment by mishal asher

Hello! my name is mishal and i am 18 years old and i was diagnosed with viral meningitis last year.I have read all the comments and i am happy to know that i am not alone. My condition was horrible, i had photophobia, a severe headache and pain in my back. i also had vomiting and uncontrollable shaking in my arms and my neck. it had started at night, where i got a severe headache and i started crying, my mother took me to the hospital and i was sent back with some painkillers. at night it got a lot worse where i couldn't sleep as the pain was so intense. my mother was so frightened as i started shaking that she took me again where i was admitted and diagnosed with viral meningitis.
When i found out, i thought i was the most unluckiest girl. my exams were in less than a week and i had studied day and night for three years. my doctor said that the recovery required three weeks. i was depressed, i thought that it was unfair. my parents didn't push exams and urged me to do it next year but i was determined. i missed two exams but did the rest.
I did my exams despite what everyone said. i didn't want to be different, left behind where all my friends have gone up a level. It was hard, i did them .. i had to wear sunglasses and i found that my learning capabilities had deteriorated. my hands were shaky but I DID IT.
one of my exams was arts, which i was determined to do. everyone said that i couldn't do it.. that my health was bad, but i didn't let them stop me. i love art and i remember i did my paper with so much happiness and love and effort. i enjoyed it.. even though my hands were so shaky i did it.
then the results came out and i got top in my city for art. i got an A*.. i was so happy and i realised that despite all odds i could do it. and i did.
now after a year, i am having difficulty in everything i do. i have a ringing in my ears which could possibly be tinnitus and my hands and neck shake sometimes which is annoying because i can't hold any object in my hand without dropping it. my neck starts to shake and my teeth chatter making it difficult to talk sometimes. i also have blurred vision occasionally where i have to blink and rub my eyes to get my eyes to see clearer. i have also noticed that this has led to slowing down my thought process. i am very slow in grasping concepts and its alot harder for me to stay focused and learn things. i have to constantly revise my topics as i forget them very easily. there are also occasions when i suddenly go blank in my class or papers and i cannot think of anything... it is very weird.
I am searching for long term after effects because i feel different and it is affecting my life.
i found this site and this discussion and i realised so many people suffer from this and i know now that i am not alone.

Posted on 30 April 2013

Comment by Nicola Edwards

Hi my name is Nicola 5 yrs ago I was 24 wks pregnant and woke up 1 morning screaming with pain in my head, my husband rang an ambulance and by the time they got me to hospital I didn't no who I was ,were I was or who my husband was, slipping in a out of consciousness I was admitted to ICU were docs confirmed strep a meningitis .
I spent 2 wks in a coma had a trackioctomy performed and as I was pregnant my baby had 2 b scanned daily ,they told my husband to expect the worst for me and our baby but against all odds we pulled through.
Wen I woke up the docs noticed I had weakness down my right side after nemourous tests they found out I had suffered a stroke while in a coma my baby was still fighting away inside then 2 days later I again started 2 become disorientated an slipping in an out of consciousness I woke up 3 days later in ICUs again to find I had developed Pre eclampsia and my baby had to be brought at 27 wks by emergency c section she had been rushed to special care in another hospital across the city from me I never saw her for the first 11 days of her life as I was to weak to go c her.i spent an other 10 days in the hospital receiving physio an occupational therapy then I was allowed home my baby was still in ICUs fighting 4 her life.
1 wk later I had all the symptoms of meningitis again was rushed back to hospital were they said I had developed encephalitis and after MRI they found a blood clot on the brain I was in hospital for 2 mths my baby actually came out of hospital b4 me she is now a very healthy and energetic 5 yr old who upto now shows no long term after affects of her ordeal I have been left with severe epilepsy,and still have a right sided weakness ,insomnia, impaired immune system ,breathing problems an general poor health .
but I am still here and able to watch my daughter grow ...

Posted on 27 April 2013

Comment by Mike lyman

Hi my name is Mike I contracted bacterial meningitis when I was 12. I felt fine one morning at my sisters house and started eating breakfast after about 2 bites I was throwing up uncontrollably. All I remember before I went to the hospital was the pain from the headache and not being able to sleep. My mom took me to the hospital where I was doped with morphine to try to help with the pain but nothing helped. I spent over a week in the hospital and got a pic line. I was sent home with the pic line and administered vancomycin for 2 weeks. I had to go to the doctors every week to get blood drawn to check my WBC. I missed a year and a half of schooling. My temperature after the pic line was about 94 now it's is about 96 if it goes higher I have a fever. I am now 24 and have been noticing more and more lately that I have little to no memory of my childhood through high school. My sight has been fading for the past few years and have had ringing in my right ear almost non stop. Joints are constantly hurting terrible circulation in hands and feet. I get the out of balance thing a lot I get up and my sight is gone and I feel drunk. I wobble around for about 10-15 secs before my sight slowly comes back. I have been checked out by a neurologist but everyone I see tells me I check out fine.
I don't know if depression is a long term effect but I have been noticing that I am more and more depressed with each passing day. I don know why, I have two beautiful children and an amazing wife. Things just keep slowly slipping away from me.

It has been comfortting to know that there are others like me. Such sad stories for everyone though. Thank you.

Posted on 23 April 2013

Comment by Sara Barnes

How many of you know (pre 1975) if you were given chloramphenicol and or trimethoprim-sulfamethoxazole? I realize my records are no longer available and I have no family to advise me...but does anyone have any idea? I have been doing more research and found a link between chloramphenicol and PN. This is just a start and I have a long way to go.

Thanks any info please email me...
Sarabarnes7@aol.com

Posted on 21 April 2013

Comment by Sara Barnes

Like everyone else I am so glad to have found this site. I had bacterial when I was 2 back in 1973. I was told i wouldn't make it through the night, i spent 10 days in a coma and four weeks in the hospital. I have always been the one to catch ANYTHING that goes around cold wise. Everything that has been said here about immune systems is just like me. I always said it was because I was so sick as a child and hospitalized.

Now at 39 I have spent the past year sicker than a dog with everything from bladder issues (cystitis) to now what the doctors say is peripheral neuropathy. I have always become "worn down" easily. I can't remember periods of childhood, only little glimpses just as everyone else has said. My father doesn't even exist in my memories until high school years. I have poor vision but more concerning is over the past year I have been experiencing "foggy brain". I can't get my words out or remember things. My kids even call me out on it. I always have been very active, playing sports, swimming and an avid jogger. I have tried to find the connection to meningitis for years now. I swear I knew there had to be a link here. The doctors say now that it is a possibility with having spinal taps repeatedly as a child it could have caused some type of issue but what they are not specific about (liability issues I am certain). I am just so glad to hear from other people who have experienced the same things as me.

Oh, and to comment on another post, I have déjà vu all the time and always have. I have always had mild ringing in the ears and another odd thing, sometimes when people talk it sounds like they are speaking on fast forward and high pitched. Movements around me seem on warp speed. Conversely I get the slow talking and low pitched voices - freaks me out to be honest but I have had it my whole life. I also have always had sleep paralysis...not sure if there is any link there. This is just my story - oh and as far as being an addictive personality, I find that I am. I always focused it on jogging or swimming but over the past year I can't jog and swimming I am not able to do as obsessively as I would like lol. Well that is my very abridged version, skimming the very surface of my experience.

Thank you all for listening and sharing! It has lifted my spirits so much.

Posted on 11 April 2013

Comment by D. Pennie

To Joan Morris: Your problem sounds very similar to mine, which has lead me to this site in the first place.

I had Meningitis at 16 months old. I am 29 years old now. I have had a plethora of medical issues, all mostly minor, my entire life. A few recent issues have lead me to researching long-term effects of meningitis. Last year I had a sleep study done, which lead my doctors to believe I may have Narcolepsy. That was the first medical issue I researched which lead me to long-term effects of meningitis.

Over the last two years, I have had something going on with my left eye. I've always had depth perception issues, and slow focusing problems. Recently I've been seeing double vision, and my vision prescription is being dramatically changed to resolve these issues. I'm worried about losing my vision, but I am not finding a lot of information on meningitis causing vision loss decades later.

As a child I had learning issues. Mostly due to reading comprehension problems and dyslexia. I still struggle with the dyslexia and my reading is slow, but has improved with much effort on my part to "push through" and pick up a reading habit, even though it's a tasking hobby for someone like me.

I have always had sleeping issues, insomnia, nightmares, anxiety. I have had small bouts of arthritic symptoms in my knees and hands. I have had a lymph node removed for biopsy, as it had grown 4 times normal size. I have struggled with scoliosis that was discovered in early adulthood. Currently I am struggling with lower back/lumbar issues which resemble bulging discs or herniated discs, along with sciatica and bursitis in my hip. The hip problems showed up while experiencing a fever spike 3 months ago when I had the flu for the first time in many years.

I'm convinced there's some connection to meningitis for many of these issues, but it seems there is just not enough research completed to know what the true list of long term effects are for meningitis survivors.

Posted on 04 April 2013

Comment by eva marilao

Greetings in The name of the Lord,I have a son named kevin he suffer bacterial meningitis when he was 3 months old,now his 6 years old,he start going school at the age of 5, i saw some effects of meningitis on him like his right hand cannot work properly,he had a speech problem,but he learned fast,he often temper tantrums,and have co ordination problems,im afraid for him because he always get mad and fight his classmates specially when they get laugh after him because of her speech problem. he had a two sisters but they always fighting because they dont understand that their little brother is suffering in meningitis,is all about what can i do about this situation,Pls help:::::

Posted on 02 April 2013

Comment by B.Y

To add to my previous post:

I have always had poor motor skills, and as I've gotten older, I find it very hard to write due to cramping. I have severe bipolar issues, but no addictions. PTSD, and borderline personality disorder are in there too. I have a very good memory, but the fog of depression and the delusions of mania get in the way every now and then.

My cure for what was constant migraines is chiropractic. I've never been so migraine free in my life. My doctor was a god-send. If you haven't tried it, I suggest doing so. They haven't completely gone away, but three or four a month is better than three or four a week.

Silverdrgn22@hotmail...

Posted on 30 March 2013

Comment by Renee K

When I was 13 I had viral meningitis. Prior to the illness I was a very intelligent, organized teenager. After, I found I was not able to comprehend things as easily and organization became very difficult for me. I'm now 37 and my ability to organize things is nonexistant. Thinking about organizing things in the house is almost crippling to me. I have anxiety attacks over trying to get the house organized and I truly believe this is from the meningitis. Anyone else had a similar after effect?

Posted on 18 March 2013

Comment by Jacqueline Rodriguez

I was born in 1988 and also born with meningitis im now 24.. i sometimes loose my memory i go blank, im always trembling, promlems with my right leg and both hands my fingers get stuck sometimes, migranes everydayi have gotten cat scans an nothing, chest pain,i hate this.....

Posted on 18 March 2013

Comment by Candice Murchie

I was diagnosed with Viral Meningitis in 2011 aged 50 & 53 kg. The odd part of this was how it began. I was off to play tennis in the morning but found a slight blur on one of my eyes so I called into the Optometrist to see what he could make of it. That night I fell asleep on the lounge and when I awoke I had a very bad headache so went to bed. I couldn't sleep as I was increasingly in severe pain, not having had many headaches before I found it quite unbareable. No pain killer would nudge it so I went to a Dr, crying with so much pain. When they decided I needed to get myself to the hospital. It was there that I discovered I had Meningitis(WTF) but they didn't know if it was viral or bacterial until the spinal tap results were complete, about a week away. I spent the night in the Emergency room loaded with morphine and panadol. The next day they Ambo'd me to the next hospital ( I felt every bump in the road go up my spine) where I spent 5 days being given antibiotics & topped up with morphine. I felt like a 90 yr old.The pain in my spine was excrusiating. Then, when the results came in,it turned out to be viral thank God, I was sent home & have been fine since. I don't think I have had any side effects, my eyes have deterioated because of age. My memory too. I just hope I don't get it again, that's why I am on this site to find out if I can get it again but have not found that answer yet. I was lucky the results showed it was vira, & I was told antibiotics were not neccessary for viral meningitis. They didn't isolate me either so if it had been bacterial then It could have spread. I think I got it from my job as a security guard doing pat down, it could have been passed on from someone I came in contact with doing my job. Will never know exactly tho.

Posted on 17 March 2013

Comment by B.Y

I had both viral and bacterial meningitis when I was 6mo old. My doctors claimed I was a miracle baby, because I had 108 degree temp for two months straight without "noticeable handicap".

I used to get very bad seizure like spells that locked up my ability to communicate, came on like the worst possible migraine, and a deja vu type of experience. As I said, I couldn't
Communicate, so hall monitors found me wondering the halls, and eventually learned from my parents of my issues. Cat scans, MRIs, EEGs, were all normal. No typical signs of seizures. Those went away after puberty, but I have poor balance, an essential tremor, poor hand eye coordination, and remarkable trouble with math. I also have r.regular migraines fairly often. They suck, but not as bad as whatever it was that was afflicting me in my youth.

Posted on 16 March 2013

Comment by Robert Dee Jones

When I was 7 I had meningitis and spent many days in a coma. I was very blessed to come out of the coma. Through the years I have had many illnesses. The meningitis came on in December of 1959. I am now having signs of MS but have not been diagnosed with MS as of yet. I want to know if MS can be a long term side effect of the Meningitis. I am now 60. If any one has any information let me know.

Posted on 10 March 2013

Comment by Berj

Hi, my name is Berj, I'm 30 years old and contracted bacterial meningitis when I was 25. To this day, the doctors can't pin point how I contracted it. At the time I was exercising 5 days a week, eating healthy, didn't drink much, didn't smoke, yet I had contracted this nasty disease and knew something was wrong the moment I was unable to lift my head up without excessive pain.

So the first time I had extreme headaches, the hospital admitted me and released me a few hours later with migraine headaches. They prescribed me some pain killers and sent me on my way. After taking the pain killers that night, I woke up at 5am with excruciating headaches and vomiting like I've never experienced before in my life. Just 4 years prior, I had kidney stones that sent me to the hospital for 5 days, so I had a pain threshold, but this was out of this world excruciating.

I was literally balled up and couldn't move, I had gone to school the day prior and felt the agonizing pain, but this morning was different, I couldn't even move. I called my parents who picked me up immediately and took me to the local emergency room here in Los Angeles. At first, the same people who told me I had migraines the day prior were somewhat rude and made me sit in the waiting room for literally an hour and a half before admitting me. Suffice to say, I was suffering, to the point where I was damn near screaming in pain. They finally admitted me, ran some tests, hooked me up to some morphine, and had a doctor inform me that I had to go about a spinal tap. The first tap was unsuccessful, the doctor tried again, and second time was a charm. They informed me that I needed to be hooked up to antibiotics immediately in an isolated room, and morphine for the pain, including all sorts of sleeping pills including ambien. I felt a little bad because I was always sketchy about chemical imbalances, but what was I to do, it had to be taken for the immense pain I was dealing with.

After 6 days of being admitted to the hospital bed, CT scans, etc., they finally gave me the ok to head home. I went home feeling like a new person, went to after treatment and care, did more CT scans, and after about a year, the doctors told me that I was as good as new.

Well, since than, I have not been able to regain the weight or muscle I had. I was 160 pounds and healthy as a horse, and with the same diet and exercise for the past 5 years, It's been a struggle to reach 150, gaining that weight back has been near impossible no matter what I do.

I have migraine headaches almost every morning, daily, which can be eradicated with a lot of water and alieve. According to my doctor, it could be sleep apnea, but no matter what methods I've taken in the past few years to address the morning headaches, they're still there. After years of this, you become immune to the pain, but it doesn't mean it hasn't bothered me every single day having to wake up feeling like my head is about to explode.

I also had memory issues and sometimes dose off and lose my balance. I don't completely black out, but I've had moments where I've felt dizzy and out of sync. The main issue I have is with the constant headaches, they haven't gone away and taking pain killers to alleviate the pain is a temporarily solution. At 30 years old, I should be at the prime of my life as I've generally always taken care of my mind, body, and soul, but I was more healthy in my early 20's than I have been now and I'm on the same regimen in terms of my daily health routines. It seems after the bacterial meningitis, my body has reacted differently to things it would have never reacted to in the past.

I am also now very sensitive to dust mites and dirt, as they can easily trigger headaches, nausea, and dizziness.

All in all, I hope whoever has to deal with this understands that the long standing effects can hit you at any moment and to not give up on after care and treatment to ensure you are getting the proper care. I made the mistake of trusting my instincts after a few doctor visits the following year where I should have continued doing what it took to ensure these issues wouldn't arise in the future.

Good luck to you all and God speed.

Posted on 10 March 2013

Comment by Michele Schipper

Hi. My name is Michele and I am 43 years old. March of '70 at 7months old I was diagnosed with Bacterial Spinal Meningitis. Like so many others here I am looking for answers to long term after effects. Because of the 104.+ degree fever I was on an ice bed for 2 days for in the hospital I suffered convulsions which at 15 which I contracted Mono and have another 104 temp it trigger the scar tissue in my right temporal lobe to start producing epileptic seizures. Thankfully to brain surgery I am now 20 years seizure free! I've had lumbar back problems mild arthritis for years up until 5 years ago when I tore my L4 disc. Since then the doctors cannot get me pain free. My lumbar back is a mess. The tear in the disc has healed. The doctors I am currently seeing at a pain clinic have me on Valium at night and Zanaflex during the day for muscle spasms that just keep getting worse. I take Percocet 3 times a day for the back pain and at this moment I am in more pain than I have been in years. Ive been to a neurosurgeon who said there was nothing on my MRI which indicated I needed surgery but if my pain did not go away they could do a fusion. Im 43. He does not want to do that at my age especially with no definite problem except I am in constant pain 24/7. I too had infertility issues and thankfully was able to conceive my daughter when I was 30. What did this disease do? Currently Im diagnosed with Lumbar Sacralspondolysis, Degenerative Disc Disease. Unfortunately the depression is there too because of the issues. Anyone else experiencing back issues and what or is there any treatment?

Posted on 09 March 2013

Comment by mike. Jones

i had meningitis when i was a few weeks old in 1976 im now 36 im having real bad neck pain some memorie lose my arms and hands go to sleep all the time and most of the time i just feel weak and bad like im geting sick and ringing in ears most of the time and leg cramps often

Posted on 09 March 2013

Comment by Karen Moore

I cannot believe what I am reading! I finally, at the age of 60, after having been sick for most of my life...just remembered that I had meningitis at about the age of seven.

I have had everything since then - it seems...from one illness to another - from ringing in the ears...to vertigo (very bad in the 1980s - finally was told I had Meniere's syndrome?) - to fevers of unknown origin, to chills to joint aches to what felt like the flue every couple of months to colds to female problems to nerve problems in my body (neuromas that had to be removed) to Carpal Tunnel Syndrome twice on each wrist...to ganglion cysts on wriists and back and legs....to connective tissue disease and skin problems to IBS...to depression...to OCD ...to other autoimmune disorders to migraines to RA to Multiple
Sclerosis to Fibromyalgia to Narcolepsy to Chronic Fatigue to Spinal Stenosis with bone spurs in 2012...rendering me unable to walk, basically.

Since 1990 or so - I have not been able to feel healthy on a day to day or weekly or monthly basis.. I never know if I will wake up with my body feeling like my heart beats all the way to the ends of my fingers and every moment in a camera shot - almost like a strobe light going off every heartbeat...with brain fog...stiffness...migraines...debilitating migraines...hip pain...leg pain...back pain...neuropathy in hands and feet to the point that I cannot open any jars anymore - to blue feet that are cold and numb...to hives and skin rashes...to cystic acne on my face out of the blue (maybe due to the steroids that the Docs put me on at the time?) - to my eyebrows itching to the point that it seemed like the individual eyebrow hairs were moving and trying to come out...to more chills and fevers...to right foot drop...falling down...balance problems...speech things like losing words in the middle of a sentence...to sleeping anywhere at any time - even lying down in a department store because my heart is racing and I think I have to close my eyes and not hyperventilate for a few minutes...to just being totally stiff and miserable and not being able to take a shower or do anything but lie on the sofa/bed and almost crying.

I cannot make plans at all and am just thankful I have finally found a Doctor who has put me on a Pain Patch (Butrans) - with breakthrough meds - so I can get around a small bit. I still have to hire someone three times a week to help me do anything.

I just do not understand why I have to feel this way and have the strobe light aches and fever and joint pain and migtraines and brain fog and depression every few days or weeks.????
Does anyone else feel like this? And sometimes, I just do not think I can go to a family get together because I don't feel right and have ulcers in my mouth and a sore throat and am no fun...and then...sometimes I have insomnia ??? And other times I sleep 11 to 16 hours????
Please tell me if you have any if these symptoms? Or if you have advice? Smile..

You may e-mail me at "karensnyder52@gmail.com"

Thanks!

Posted on 21 February 2013

Comment by Tiffany Garland

I'm glad I found this site, I was 2 months old when I contracted bacterial meningitis, I'm 43 now and have never experienced any of these symptoms. I do get ringing in the ears, but it comes and goes, and I do get dizzy every once in a while, but other than that I don't have any fibromyalgia symptoms or any chronic pain issues.
What lead me to this site was that I have been doing Kundalini Yoga and meditations and during one of the sessions I was curious to see if there were any long-term effects of meningitis. I now realize that there could be some damage that I have never been aware of before, but I feel doing the Kundalini Yoga & meditations will help to heal these issues since these techniques work directly with the nervous system and endocrine system. I have been addicted to numerous substances and currently use marijuana, but I don't know if having meningitis was a catalyst for the substance abuse or not because I also suffer from PTSD. Maybe the meningitis made me more susceptible to getting PTSD. I struggle with using pot, but I am taking measures to quit, I really want to reap the rewards of meditation & ky and I want everyone to know that meditating & ky are great ways to alleviate your pain and symptoms.

Posted on 19 February 2013

Comment by Jessica Sinn

I'm online trying to find some answers regarding my mother. She's 53 now and has had more than many health issues the past 10 years. To make an extremely long story not so long, she had a spinal fusion in the summer of 2010. July 2011 the titanium hardware was removed (the doctor believed that the hardware was causing her hip and back pain). Sept. 28, 2011 she started complaining of severe migraines (even with the lights off, tv and anything that could possibly make a sound turned off, she couldn't open her eyes without vomiting) The next day I had left for work at 4am and checked on her, she was still complaining of a severe migraine but I didn't think anything of it. I just figured it was relentless and would eventually settle off. I returned home from work that evening and she was asleep, so I didn't disturb her. She slept through the entire night without so much as a sound made. I woke up around 10am that Saturday morning to the sound of her vomiting. I checked on her and she was vomiting green bile everywhere. She had no idea who I was, she was screaming in pain from the migraine, and she couldn't move her neck at all because kept saying it was so stiff. I took her to the ER in our hometown. About 2 hours later they informed me they were transferring her to a larger hospital about an hour away because they suspected she had meningitis. At that hospital they did a lumbar puncture which confirmed the meningitis. She was rushed into emergency surgery (she had one spot from the hardware removal surgery 3 months prior that still wasn't healed). After the surgery, the surgeon spoke to me (by this point it was 1am) and said that he flushed out as much of the infection as he could but that it had probably already traveled up into her brain. He said should probably wouldn't be alive by daylight. (I will spare you my reactions to the news, but it was not pretty) She was in a coma for a few days, running temps as high as 105 degrees. After almost 2 weeks in ICU, she was moved to a long term health care facility and was in there for 3 weeks receiving IV antibiotics. She survived (barely) and has been home for almost 1 1/2 yrs. She still has complications though, memory loss was the first sign I noticed. There are days were she is confused, hallucinates, doesn't know her surroundings, or me (her daughter). She has muscle spasms, neuropathy, and many other symptoms that doctors (we've seen over 20 different specialists) can pinpoint what is causing these. I'm just trying to find some answers, seeing as how we're not getting any from all of these different doctors.

Posted on 12 February 2013

Comment by sara chaffin

i had spinal menengitis when i was 3yrs older i am 38 and i have been wondering if the after affects from the disea is the reason why i have a mental illness.

Posted on 11 February 2013

Comment by JoAnn Brethouwer

I am a spinal meningitis survivor. I had sp when I was 4 years old, I'm now 56. It was 1960 when I came down with severe "flu" symptoms. I was taken to the hospital and fortunately for me there happened to be a Neurosurgeon there visiting a family member. He overheard conversations about me from the staff and offered to take a look at me and my charts. He directed that I was to have a spinal tap (it took four grown men to hold me still for that). The results were as he suspected, spinal meningitis. My mother does not remember if it was bacterial or viral. I remember the horror of being 4 years old and having IVs in my arms and legs (alternately). They hadn't invented "plastic" pliable IV needles then, my arms and legs had to be taped to a board to hold them immovable.
It took me weeks to recover, WEEKS! I've always been weak as a result, but we humans are resilient and I adapted growning up. I would lose my balance, and have had severe tinnitis for as long as I can remember. But in the past 12 years I have went from one Doctor to another with symptoms that cannot be traced to any specific origin. I've suffered from severe, mind numbing headahes, muscle spasms that would send me to the hospital in the middle of the night. I've had so many different obnoxious diagnostic treatments and tests that were not only painful, but futile. I've had a radiofrequency neurotomy for the purpose of destroying nerve endings that caused me excrutiating pain in my neck. I've had disco-grams (seriously, that's what it was called), that was unconclusive, MRI's (the thought I might have MS and are currently under treatment for it) that were unconclusive. EMGs, to track muscle reflexes; those triggered spasms and cramps that were recorded on readouts. I'm scheduled now to go to Mayo Clinic in February '13.
Each time I gave my medical history, I always included that I had spinal meningitis, but because I was so young and it had been so long ago, it was never considered as a factor until I summed up the courage to see yet another Neurologist.
I explained to him that I felt as though I was being treated like a nuisance patient, and given meds for a diagnosis that was never confirmed. I was not seeking a "disability" suit, I'm self-supporting, and I was in chronic pain from cramps that would not stop and would migrate to different parts of my body, usually starting at my feet.
It is only in the past 6 months that the muscles are now "locked" and won't release. The ones that scare me the most are the muscles around my neck and throat, making it difficult to swallow. And the meds I'm on cause chronic dry mouth, which makes it even harder to swallow. This Neurologist remarked that there is very little if any conclusive evidence that there would be lasting effects from spinal meningitis, that could linger and crop up so many decades later. But there was no other explanation other than. He recommended and would refer me to John Hopkins or Mayo Clinic. I chose Mayo Clinic because it is closer to me.
I can no longer drive, I can no longer garden or even do what I used to take for granted by way of household chores. I'm losing my ability to manuever my small muscle motor skills.
I don't expect anyone to identify with my symptoms, I do appreciate the opportunity to share them though. I've had no one else to talk with about this. If I find out that what I am experiencing is the results of long term side effects of spinal meningitis, I will post again. Oh one more thing, Fibro-myalgia, ALS, PLS, and epileptic seizures are ruled out as well.
Thank you again for letting me share. Maybe I will find the solution, if not; then once again I'll have to learn to adapt.

Posted on 11 February 2013

Comment by JoAnn Brethouwer

I read so many posts where the questions were asked as to how we recieved treatments for the symptoms we are experiencing in connection to the lasting side effects from having spinal meningitis. I'd like to share my diagnostic and treatments for the symptoms I've endured for YEARS.

Tinitits (ringing, cricket/locust chirping, bells, echoing squeals in the middle ear) - I was told there is no treatment or cure for chronic tinitis. It's woke me up for years and prevented me from concentrating and remembering what I've been told or said spoken to me. I do my best to ignore it, I've had it as long as I can remember and can not remember a time when I did not have it.

Muscle Spasms/Cramps, Tremoring, Muscle Tics - I've been taking two muscle relaxers for jointly for a year now. I've been prescribed Flexeryl (cyclobenzaprine) and have been on it faithfully for 11 years. I was prescribed an additional drug (muscle relaxer) call Baclofen. These two drugs manage to keep the length of time that the spasms/cramps last to a minimum. They used to last as long as 1/2 hour and then move or migrate to another set of muscles starting from my feet up. But that's not set in stone, the spasms can start anywhere on my body. The most severe are always in my neck, the back of my neck from the brain stem down to the 1st t-vertibrae and "seize up" or lock. I need to visit the ER when that happens for trigger point shots (A cortizone mixture) or Demoral. I rarely leave with any prescription as I already have prespcription pain meds at home. As I mentioned I am on a prescription pain med in a mild dose. It's my decision to take the mild dose. I've also taken or wore a Fentanyl patch for chronic pain management. I went off Fentanyl by choice. It was expensive, and even though my insurance paid over $400 a month for it, I knew there would come a time soon when with retirement, I would no longer have the Insurance company picking up the costs.

I have been prescribed Cymbalta for pain management. There is documented evidence that the brain registers pain in the same area that it registers depression or sadness. All Cymbalta does is make me "indifferent" to the pain, or helps me to mentally move on quickly when the pain/discomfort starts.

For Migraines I was prescribed Imatrex inhalant. Worked miracles for me, but I was taken off of them because I'd been on it for far too long. I was prescribed narcotic pain meds (Fentanyl, oxycodone and others).

I not only suffer with excruciating pain, but also with mild to moderate discomfort. My skin feels like it's "crawling" from time to time. Sometimes how a clothing garment fits on me can cause discomfort. I don't care for having things "draped" on me (scarves, capes, etc.) Sometimes I can't tolerate the tight knit feel of some stretch clothing.

I do cryptograms daily, as well as SuDoKu puzzles, and LA Times crosswords to keep my mind sharp and it helps my memory. I try to read, and watch very little television. I am a quilter, and that's helps with my small muscle motor skills.

These are some of the treatments I'm currently doing to sustain my mental and physical health. I stopped going to Physical Therapy, it became uncomfortable, even too painful even to be touched.

I'm afraid there are no meds for close intimacy discomfort, but I do have a tolerant husband.

For chronic kidney infections and loss of feeling in my bladder (not attributed to pain meds or muscle relaxers), I remind myself to go to the bathroom at least twice a day or when my eyes feel like they are swimming. <smiling> and consume lots of water. I do not drink any soda, or caffiene (coffee, tea, chocolate, etc.) Caffiene causes nervousness and will trigger tics and tremors, which lead to cramps and spasms.

I rely on taxies/cabs or my husband to get me where I want to go as I no longer drive. I've lost my way a few times (even on roads that I've driven hundreds of times) and I am under the influence of a narcotic and muscle relaxers at any given time.

I walk with a cane because I've often been unbalanced and fell, or felt like I was "tipsy" from drinking alcohol (I do not consume any alcohol beverage).

That's how I deal with symptoms and how my physicans have been treating me. I'm lucky that I now have doctors who do not treat me like I'm a nuisance. I hope others can identify with how I'm treated "symptomatically" rather than diagnostically. When I go to Mayo Clinic, I am hoping they will find solutions or give me options on treatment(s).
I wish well for everyone on this site. I for one know what you are struggling with. I can be reached at joannbrethouwer1@gmail.com. Please don't "spam" me.
Pleasant ventures and final conclusive diagnosis' are wished for all.

Posted on 08 February 2013

Comment by Michelle santana

Im a female and I used to have meningitis when I was young about 12 or 13 years old and stayed in the hospital for 1week and a half. I had many tests done on me while I was there. My symptoms included nausia and vomiting, migranes when I look up towards anything, weak, loss of balance and threw up almost anything I ate. Im perfectly fine now, ive been actually and im 20 now. I was so scared back then and am a little concerned now. Can someone please answer my question...having had meningitis at a young age, will anything bad happen to me as I get older? Mind you, im perfectly normal now.

Posted on 05 February 2013

Comment by Amy Ramirez

I am a 44 year woman who is relieved to read that there are others with long term issues from bacterial meningitis. I spent the month of September 2011 in a coma in ICU with it as well as sepsis & pneumonia. I was resuscitated twice while in there. I am a nurse and when they told me it would be a year before I would see normalcy I thought they were crazy. I was always the one that found humor in everything and always made lemonade out of life's lemons. I have struggled with ringing in the ears, balance, memory, heat tolerance (I live in Texas), and depression for the first time in my life. After reading these today I finally feel hope that I am not crazy. I feel like I went to sleep and woke up 1 month later a completely different person. Thank the lord I have an extremely loving and patient husband & son who have carried me through recovery. Thank you to all of you for sharing your trials with recovery.
I finally feel like I am not alone.

Posted on 05 February 2013

Comment by Candice Johnson

I had spinal meningitis when I was 9 weeks old I'm now 31 and today I started looking up the long term side effect of it because I need to know if it the reason I can't have kids. also with reading all of you comment it help explain why my mom couldn't understand if she read to me the whole time I was hospitalized why I was having trouble reading and doing good in school. I also have trouble hearing and head aches every so often. well if any one could help with my question I'd gratefully appreciated.

Posted on 03 February 2013

Comment by Kate

Hi my name is Kate, I got meningococcal septicaemia when I was in 4ht grade, I believe I was 8 years old now I am 24. I was in the hospital over a month, 3 days in ICU and the rest of the time on a regular floor in the hospital. After I was discharged I spent many weeks at home having a nurse come to change my dressings where my right arm was affected the most by the disease.
At that time I was lucky to have a teacher that cared so much she came into my house and home schooled me until I was strong enough to go back to school, which took a long time. Thankfully I caught up and was never held back.
I just have a couple questions for you guys. I have had some of the affects like you have described bipolar, depression, and serve impulsive behavior. I have also had issues with addition I have gotten help for the metal issues as well as my addiction and seem to be doing better. Also after I got out of the hospital I experienced a lot of weight gain and still deal with it today.
Have any of you also had any of these affects, with weight gain and addiction?

Posted on 30 January 2013

Comment by Y.C

I forgot to mention that I also suffer from muscle spasms. Sometimes I can be walking and my leg or ankle will like get tight and twiches,
[it hard to explain] and sometimes I end up falling cause it hard to stand when that happens. I have bladder issues and my eyes are sensitive to light so I wear sunglasses alot. I guess that counts as some brain damage doesn't it.

Posted on 30 January 2013

Comment by Y.C.

I had bacterial meningitis when I was 10 days old so I was a newborn.
I spent 3 weeks in the ICU and I survived after a hard battle but my mother was told that I would have hearing issues and that I could have some brain damage.
I am 18 years old now, I am a straight A student in school, and I love reading.
I have no brain damage.
But over the years just like the docter said, I indeed have hearing issues. Both of my ears suffer minor hearing loss from time to time, but I think it getting worse.
I am glad I found this website, it has helped me to know that I am not alone.

Posted on 26 January 2013

Comment by MissD Zhao

I became ill from Viral Spinal Meningitis, which I was 2 months old. I was told that I contracted it while in womb, my mother became sick while pregnant with me.
I have no memory of anything that took place as I was too young obviously.
I am 35 now and have had many health issues as a result.
At the age of 5 I had a total ear reconstruction on my right ear, as my inner ear bones shattered due to such a high fever from the meningitis.
My hearing is nearly gone now. I am now 35 and starting to learn ASL as an adult, with the memory difficulties it is not the easiest thing to do.
I was not aware that many others have muscle and joint stiffness and am able to understand a little more about me and why I hurt so very badly.
I have had some doctors tell me that I have CFS or Fibro Myalgia although never noted it or treated me for it..
I have never really had a good equilibrium so falling down or things of that nature happen to me quite often. I have epilepsy due to head injuries (I.E. the meningitis and falling.)
Now feeling caught between worlds hearing and non-hearing is an awkward feeling at times.
To try and explain that you can not hear someone although my speech is nearly perfect many do not understand. I have to remind even my doctors that they need to look at me when they speak as my lip reading had assisted me in my journey. Where I live ASL classes are only offered to children for free.
I have always enjoyed working although I look back thinking how was I able to accomplish so much with what little hearing I did have. I am not one who lets things like this hold me back. I know I have a bright and wonderful future even with the difficulties I have been through and will face it is a wonderful life for everyone to be able to learn from others.
Thank you to everyone for sharing their stories, it has helped me in many ways. Love to all!

Posted on 24 January 2013

Comment by elizabeth cornish

I collapsed at work in March last year after being blue lighted to hospital it was discovered I had severe viral meningitis and phneumonia my kidneys were at the point of failing and my blood pressure dropped so much they were going to have me transferred but apparently things took a turn for the beter and the bp began to rise after 4 days of intensive intravenous antibiotics 2 of which I was unconcious I was sent home with a months supply of further abs and a combination of pills,my partner works abroad so I had no one at home to help me but thankfully my neighbour looked after and walked our dogs and my son who brought me home came over when he could to see I was ok,eventually,about 2 months later, I began to feel better but have been left with horrid after effects as have many others,headaches from hell,I have passed out a few times for no reason,my limbs ache all the time my eyesight is terrible,my left leg drags and on a daily basis i get cramp like pain starting at my hip and working down my leg to the ankle and my legs are constantly restless,my balance is shot to poop and a lot of the time I feel drunk fair enough but I dont drink.im constantly tired my memory is terrible and have gone from working,doing 7 sessions of zumba a week running a house wallking miles with the dogs gardening and chasing here there and everywhere to being able to do NOT A LOT I know im lucky so many others are not and I know that I shouldnt moan really but when your consultant tells you all it is is post viral fatigue and you cant expect to have gone through what you did and your body not suffer in some way you do tend to feel a bit pd off xxxx

Posted on 23 January 2013

Comment by Jeta

Hello,i am Jeta . Im a 30 year old single mom. I was a workoholic and spinal meningitis gave me a bad headache one day what forced me to go to the emergency room. I have not been the same since i can not sit for too long because i get stiff and start having a headache and even throw up if i am eating.i have memory loss both short and long term but in a different way - i know i remember and know but if i try to focus and remember what happened even 2 months ago i will bleed from the back of my mouth or nose.had it checked by the doctors because it happens all the time and they think its strange . I had all kinds of test and the results show nothing. I am also fatigue and when i move my neck back and toward or side to side i get a drunk feeling and loose balance and faint. I can not drive because of that.i go get bad headaches alight and noise bother me . I can do one thing at a time and have a hard time multitasking .i also have a hard time concentrating and these symptoms are getting worse. Hope where is something to help me and everyone else.much love .

Posted on 18 January 2013

Comment by Casey Flowers

I have a boyfriend that I have known since about 11....he had meningitis as a baby and he's 29 now. We get into arguments all the time because of the way he think and his nasty behavior with me. One minute I'm the best thing that ever happen to him and the next he's calling me out my name and he hates me....he have cancer of the stomach now and his conditions are getting worse....when he leaves from our house it seems like I am out of sight so out of his mind....he can ignore me for weeks at a time like we never even knew eachother....I don't get it. He says I'm mean and bossy when its very clear that i only want the best for him....I never try to tell hm what to do...I suggest things...when he talks alot of times it dont make sense...so i analyze. Anything I say good it seems like he takes it as if I said something offensive...I dont think he comprehends that well, which is why we get into it all the time....He also is loosing some of his memory...I really dont blame him, I blame meningitis...besides im a lover not a fighter and a very good underatanding woman...so I know I dont provoke these episodes....

Posted on 16 January 2013

Comment by Sage Stormlover

I got viral meningitis almost a year ago. I also get chronic acute pancreatitis (idiopathic, I rarely drink) I had pancreatitis for 6 weeks before suddenly waking up puking my guts out, barely able to move my head or walk. I had a fever of 105 for a week. I'm also a rapid metabolizer and due to several awful visits to the ER, I suffered at home for 9 days. By the time I went to the ER and the dr did a lumbar puncture, my numbers were just a couple below for a positive test. My ER dr went to the lab to check the results himself. He said "given that ur white blood cell count in ur csf is abnormally high, ur fever, neck pain and vomiting I'm treating you for viral meningitis". He never made any notes on my chart!!! So every other dr, nurse and specialist who looks at those tests results tries to argue with me that I did not have meningitis!! Argh... A year later I have some serious neurological issues: stuttering, slurring, staggering, a total devastation of not only short term memory but also long term. In addition I lose control of my hands, my vision in both eyes is seriously impaired. My infectious disease specialist now suspects I have MS :( good gods, it can't be!!! In a year I've had FOUR pancreatic attacks, kidney stones and a pinched sciatic nerve while still fighting to recover from meningitis. I envision health for everyone...
In Light,
Sage

Posted on 15 January 2013

Comment by Jenna Hoyt

My Name I Jenna. Im Now 18 Years ld. I Had Bacterial Spinal menegitis When I Was 11 Years Old. I dont Remember Much. However, I Do Remember My Mom Rushing me To The Hospital Because I Had Severe Migrains. Also, I Stopped Eating For Days & Also Vomited. When I Got To The Hospital They Were Questioning me But I Was Unable To Respond Because I Didnt Really Remember Much I Was In The Hospital For Weeks At A Time. I Do Still Have Hearing Loss & Perifial Eye Vision Loss.

Posted on 15 January 2013

Comment by ruth matthews

Dear all,

I have been on this forum for 4 hours & have read most your posts of heart-rendering stories.
I would like to share with you how I have managed for 23 years the long term side effects of this crippling most dangerous disease known to man.
I contracted meningococcal septicemia at the age of 22.
My story is as brutal as all your own experiences. The septicaemia materialised first. I was flying back from holiday & my skin started to bleed in the airline seat. By the time we landed I was unconscious & woke up 2 weeks later in a hospital isolation room.

My mum later told me I was on the 10 O'clock news as they were looking for all the passengers, as I had potentially contaminated the whole flight.

I remember I was partially aware in my coma. I could hear my mum begging them not to amputate all my blackened limbs & I would fight.
The hospital had to had to respect her wishes& I kept my limbs.
The pain was so intolerable I had to have my eyelids taped shut because even blinking would cause convulsions.

I was a month in hospital& it took me a year to learn to walk.

Throughout the years I have suffered with troubled balance, partial deafness in both ears( which is progressively getting worse)tinitus that is indescribable, horrific joint & muscle pain, every single minor brain & skin irritation you can think of, & migraines where i cannot even move a finger. I have colds, bronchitis & pneumonia every 3-6 months& to cap it all no short term memory.

Yet, at the tender age of 45, I have managed to run 5 marathons, climb Mount Everest & the Indian Himalays, travel the world, hike mountains & become qualified in outdoor survival. I've had a fabulous careers & now I am a personal trainer & ski instructor.
I put this down, to that fact that I changed my diet to a pure plant based diet. Also known as Vegan diet.
After the illness I also took up exercise then & have never stopped. It put my depressing thoughts at bay, eased the pain of my joints & generally made my life manageable.

I would recommend to you all including increasing your plant based food & reducing your animal based products, even if its only x1day a week.
Try to include at least x20 min outside exercise a day. Even if its just a walk. If even this is not possible , open your window, breath the great air we are blessed to have.
I've had days of hopelessness& never wanting see another human again.
But I am thankfull, like us all, that I have been given a second chance.
Wishing you all the best.

Posted on 14 January 2013

Comment by Prashant Sharma

Hi, I contacted maningitis at the age of six. The disease left me crippled in my left leg and neurological problems such ah muscle spasms, tremors etc. Now Im 40 yrs of age. I have problems in mathematical and analytical things. Do my meningitis has got anything to do with it.
Regds

Posted on 13 January 2013

Comment by mat stafford

Hi folks, my wife of 11 years had meningitis as a baby. she refers to it as "she had a brain injury".
however i dont think everything is right with her. she is 32 and we have 3 children. 9,8,6. there have been instances over the years which have made me worried, like she would get a loud ringing in the ears followed by deafeness, then she would pass out, but only for about 30 secs to 1 min.. at most. i have generally been there when thi has hapened and hve held her up to stop her itting the ground. also i know its a little forward but she has done it after sex especially after an intense orgasm and once i thought she was having a fit.. her head was shaking and her tounge was a bit out of her mouth. can nastiness and irrational behaviour be a longterm effect of meningitis. it seems she does something then when it is explained to her what she did she says thats not what happened and seems to come up with her own version of what happened even ifit isnt quite accurate...this is especially towards the kids... she doesnt have diabetes or low blood sugar or pressure.. has anyone else seen these symptoms in someone who has suffered meningitis..

Posted on 09 January 2013

Comment by Joan Morris

As many have said, it's amazing to hear all of these stories and realizing that we are not alone. I had meningitis when I was 2 back in 1958. I was treated with sulfa drugs, was in a coma for 2 weeks, but survived with seemingly no problems. I don't have short term memory issues, but I've always thought it was strange that I remember my childhood only in snapshots. I remember an event, here and now, but not whole years. I didn't realize that I was different until I started hearing other people talk about their memories.

I now have an issue that I'm wondering could be linked to meningitis and am wondering if anyone else has it. I call it a wonky eye. The vision in my right eye is distorted. The best way to describe it is that if I look at a telephone pole, a small piece of it appears to be cut out and moved slightly to the left. It doesn't bother my vision too much, but when I try to read small print, the letters are distorted and I realize I'm guessing or have to concentrate very hard to read it. I've been to three eye doctors who assure me there is nothing wrong with my eye; one sent me to have an MRI, suspecting it was a tumor, but the scan was clear. The eye doctors say it has to be in my brain, but they can't find anything wrong.

I'm thinking of contacting my primary care doctor for a referral to a neurologist, but because my eye condition isn't a huge problem, I'm not sure if they would do anything. The distortion never changes or moves around.

Does anyone have anything like this?

Posted on 08 January 2013

Comment by Patrick Hughes

You have no idea how good it was for me to find this discussion after some research. I was looking to find if there were any long term effects following acute bacterial meningitis that I contracted 20 years ago at age 32. At the time I was given a 20% chance to live and following "recovery" my Doctor said that I was the worst case he saw that survived with no residual damage.

Since the time of my illness I have suffered with short term memory loss but this has actually continued to improve through the years. Immediately after it was very difficult. What is extremely disconcerting are the events that have been permanently erased from my memory, both before I contracted and after. I played a round a golf at a special course and when my friend said we played it I insisted it was not the case. The golf was only played two or three years prior to our conversation.

Conversations at work with colleagues are routinely forgotten. Peoples names- no chance. My ability to concentrate has been severely affected, with little ability to stay interested in things. It has become a joke at work as I have learned to play it that way.

Fatigue has been an issue- whether it is related to my illness or not who knows, but a full physical says I am fine. Tinnitus has been a problem, and it is interesting to see that others suffer the same. Finally, it is minor, but there are about 5 or 6 words only that I fail to be able to put on paper without making a mistake. This happens almost every time that I write them. I know instantly but it always happens. Only a minor annoyance I know.

Above all the memory loss and lack of concentration I feel have held me back professionally, and I have lost a great deal of confidence as a result. It is comforting to see that it has not been my imagination after all- life is certainly different.

Good luck to all who suffer with this illness, both during and after.

Posted on 01 January 2013

Comment by Donna Lockett

I am a meningecoccal menningitus, septiemia survivor. I contacted the disease when I was 18. I am now 55. One minute I was fine and then within an hour I started feeling very cold , then the headache and nausea and very high fever. Never have I felt such pain. It made me cry and the crying made the pain even worse. My Mom took me too the hospital where they decided I had the flu and was sent home. Then the rash appeared on my legs and since it had been days since I could eat or drink my Mom took me back to the hospital and was admitted because of the dehydration. I then slipped into a como and remember little . I awoke in an isolation room and everyone that came in had to wear what looked like space suits. I recovered and they said it was a miracle . But my life has been a long struggle. I have been diagnosed with bipolar disorder, borderline personality disorder, severe depression and other psycolgical issues. I have had joint pain so severe that I started halucinating and instead of treating the pain they shot me full of haldol and put me on a psyche ward. I finally met a doctor who was willing to treat my unusual symptoms. She put me on provigil, and then ritalin because my insurance would;nt cover the provigil. It was a god send. I suspect I have some sort of brain injury that responds to the stimulating drugs. She also put me on abilify , a small dose, to help with impulse controll. it works ! And trazadone to help me sleep. I know it sounds like a lot of drugs, but they changed my life. I am able to manage working part time for the first time in my life without severe anxiety. I now eat normally , and sleep normally. Instead of depression, anxiety and obseesive compulsive behavior, I feel focused and content.... I never knew , or at least done remember that life could feel good enough to make me want to continue living. No longer am I suicidal. Meningitus is an evil disease and most doctors dont realize that the after effects can be wide ranging and progressively debilitating. Hope you can continue to search for real help and that you find it. Thanks to all for sharing their stories !

Posted on 24 December 2012

Comment by Kayla Jenae

Hi, I am 19 years old, I was diagnosed with Group B Streptococcus Meningitis at 3 days old and barely survived. I am now almost completely deaf after 11 surgeries on my ear drums and waiting on my 12th and 13th surgery for complete reconstruct of my ear drums as I have refused hearing aids.
I have been feeling ill lately, mentally and physically, which is what brought me to this page. I felt as though I was loosing my mind until I came across these stories. I have recently been experiencing muscle spasms, headaches, extreme fatigue, weakness, tunnel vision, weight loss, loss of feeling in limbs, loss of memory, unable to coordinate my mind and movements together, and most of all frustration. My hearing impairment has effected me my entire life and has only got worse since I graduated from high school. I am currently working in a seniors home and studying to be a care-aide, as my hearing was too poor to become a police officer as i hoped. Being around nearly deaf seniors all day has really brought my illness to my attention.
At first I thought I was just a hypocondriact because I have been constantly going to the doctors with different symptoms thinking I had diabetes or epilepsy or MS or Parkinson's. So I was once again trying to google what was wrong with me when I decided to look at long term effects of meningitis. From the looks of it, it is mostly all normal? Has anyone been diagnosed with anything as a long term effect from meningitis?
Reading thia was truely amazing! This page helped alot and I really enjoy reading all of your stories :)

Posted on 18 December 2012

Comment by Jennifer Beri

I want to thank every one for sharing, i had no idea there was any one who felt the way i do. I had Meningitis in 1996 where i had 40 percent to live, and in 1998 where i had 10 percent to live because i had a brain infection on top of it and had mastoid surgery. I am 43 now and am frustrated, i am happy i lived, but frustrated. Since Mening i have been sick with everything that goes around, i have about half of my hearing, and cant remember like i used to, I allways have a headache (non stop). I am sorry for all of you who have had to suffer with this. My big problem is that i have a lot of problems from it and no insurance, i dont have 5 kids so the state wont give it to me. God Bless.

Posted on 07 December 2012

Comment by menigitis head

Dr. don't get it!.. Bactrial Menigitis after having a CSF leak.. (of course was told the drainiange was allergies). trip to the dentist. yep it did it. Nasty water in the tube. Lucky to be alive.. greatful for not going septic. first year after menigitis. water on the brain. i refused to get a shunt, tooks meds. blurry vision finally left. Now it's a constant battle with muscle stiffnes and loss of words. foggy brain.. even though the brain is ok.. oh well so be it!! To all you fol\ks out there. Do with what your left with. There's always another story that's worse. Listern to your guts and seek your releif.

Posted on 04 December 2012

Comment by Trev Newsome

I had viral meningitis a year ago. Fortunately, although told it was particularly severe, I seem to have recovered well. That said, my core temperature rarely gets above 35.3 and has been down to 34.4. Naturally I feel cold all the time. My GP just tells me to wear more clothing but I feel as though I need to know why I have the problem. I've just remembered that my left ear hearing isn't what it was either. The audiologist said that it's possible that the artery / nerve going to my ear may have been affected during my illness.

Posted on 28 November 2012

Comment by deborah bal

your comments have given me more answers than i could have imagined!!ixx god bless!!

Posted on 26 November 2012

Comment by Dan Rad

My name is Dan and I have had pneumococcal meningitis seven times. In 1982 I was helping my dad in the garage, I was running with a welding rod and tripped. The rod entered my head right under my right eye and went straight back. Fortunately I survived but on Christmas monring I awoke with pneumococcal meningitis. I almost died, and after several tests my doctor found a small skull fracture which he reapaired in February of 1983. We thought our problems were over, but they were just beginning.

The second surgury was botched, and between 1984 and 1992 I got meningitis 6 more times. My doctor gave us the run around claiming he didn't know why it kept reoccuring. Finally after my last bout in 1992 I was referred to Cleveland Clinic and the problem was fixed right. I have not had meningitis since.

The last bout I had in 1992 was the worst. I went to the hospital at 9AM, puking, delusional, etc. The ER doctor just put me in a room, told my mom I was drunk which I wasn't. By 7 that evening my dad got to the hospital, went to my room only to find me convulsing violently. My body temp was 107. I spent 3 weeks in the hospital and it took a long time to recover.

After all that I do have balance problems, I always have but it could be from the surgeries as well. I have almost no memory of my childhood either. But nowadays I have worse problems and its been getting progressively worse. My ears ring constantly, My balance is poor and I've been falling down. My immune system is shot and I have headaches almost daily and they are becoming more severe. Sometimes my vision gets blurry. And thats just the physical problems, I've faced mental problems as well. I get severely depressed and extremely agitated especially around people. I been getting very confrontational with people and most of the time for no reason at all, and I'm not that kind of person at all. I never thought of meningitis as a cause to these changes in myself, and to be quite frank, I'm scared as hell. I got online to see what some of the causes may be and I guess that's how I ended up here. I hope this isn't the beginning of even worse things to come.

Posted on 25 November 2012

Comment by Andrew

Sorry I meant can get on with my life dam phone prediction playing up haha

Posted on 17 November 2012

Comment by Annie O'Donnell

Wow, to read all these messages has been really helpful this morning, thank you so much everyone to take the time and I really feel for you all and what you've had to deal with.

I had meningitis when I was 17 months old, recently I have become increasingly frustrated by still being a "sickly child" at 25.

I suffer with
-joint pains that the doctors have diagnosed with various tendinitis types

-awful migraines, at least 3-4 a week, sometimes lasting for days and always feel one lurking around

-a pretty abysmal immune system, if anything is going around I'll get it, and have perpetual sniffles all year around.

-as a child until now I suffer with kidney / urine infections, ear infections, long suffering coughs

- I also struggle with finding words, it's like they disappear from my vocabulary, as well as trouble with remembering dates and losing track of concept of time

-as a teenager I started to suffered with lower back pain, sciatica and clicking joints.


I live a pretty healthy lifestyle, I work out 5 days a week, get 8 hours+ sleep a night, only drink water, eat lots of fruit and veg, don't really drink and don't smoke.
I do Pilates and do long stretching routines after working out, yet still I wake up in the night with agonising pain in my shoulders and wrists.

My husband noted the connection between meningitis and my weak / fragile state. We joke I am a sickly victorian child. It is frustrating and ridiculous the amount of ailments I am clocking up most of the time.

I bore myself mentioning them, and I am embarrassed visiting the Doctor with a list, my husband has to force me to go when he has seen enough wincing and tears over pain.

Thinking about what my husband said led me to searching "long term effects of meningitis" and finding this page and it's blown me away, and its a sigh of relief that I'm not alone and this perhaps is reason why I am such a weakling.

I have recently been referred to a musculoskeletal specialist and will be raising the possible link to them.

annie@clueplant.com

Posted on 16 November 2012

Comment by Sharon Cortes

Hi my name is Sharon and i too was diagnosed with miningitis of the brain when i was 6weeks old,in 1980 i am now 32yo, i went through 9 spinal taps and my parents were told that i would not make it.as a child i only suffered from frequent nose bleeds. but 6 years ago i developed bells palsy. for the past couple of years i have developed migraines,memory loss,spasums in my back not to mintion other medical problems.i also thought that my condition was rare but now im kinda thankful that i have found other peolpe who suffered the same

Posted on 05 November 2012

Comment by Milda Tabbernor

Hi,I am recovering from viral meningitis.I was in hospital in August. I have peculiar sensations like my brain seems to be being squeezed or my eyes going out of focus. I am dizzy all the time too. I am always feeling cold too. Last week I was also diagnosed with Ramsey Hunt syndrome a form of shingles. I am off work at the moment but going back soon. I feel really strange. Is this it? Does it get better.?

Posted on 30 October 2012

Comment by Dave Bullard

Hi my name is Dave and when i ws 18 months old in 1974 I had Bacterial meningitis. I am 39 now and suffer Balance problems, and lack of memory, I can also only remember snipits of my life but as you say when most people can remember their whole life. looks like it is a common theme with lack of memory and balance problems.

Posted on 25 October 2012

Comment by Mike R Sawyer

right back after my long post. was searching around the website here and found this and wanted to post it on here so others could find it easily.


After effects of meningitis


Memory loss / difficulty retaining information / lack of concentration

Clumsiness / co-ordination problems

Residual headaches

Deafness / hearing problems / tinnitus / dizziness, loss of balance

Learning difficulties (ranging from temporary learning deficiencies to long term mental impairment)

Epilepsy / seizures (fits)--my personal note on this one.. if you had meningitis as a baby/toddler(0 -2 y.o.) o not be afraid to have yourself checked for epilepsy. took
21 years for it to develop into a serious disability.

Weakness, paralysis or spasms of part of body (if permanent, sometimes called cerebral palsy)

Speech problems

Loss of sight/changes in sight

Posted on 24 October 2012

Comment by Jason Davies

Hi, My name is Jason and I had pnumaccoccial Bacterial Meningitis last year 2011. I was fine sitting at home and woke up 10 days later in ICU. Unknown to me I had been in the house and started to be sick and groaning, My thought I was just sick and my 5yr old Daughter thought I was joking around. My wife went to work and thank god came home as she had the feeling something was not right. I was thrashing around the ground foaming at the mouth and screaming out. It took 3 ambulances and a doctor to sedate me and they said I almost died in the house. At the hospital after a while I was diagnosed. They I think induced a coma and I lay there for 10 days and my Family were to to expect the worst. When I woke up I was totally lucid but after a while I began to hallucinate really bad constantly after that subsided I was just weak and obviously could not walk due to the coma's muscle wasting. After a few day I noticed my hearing had gone in my right ear which was compounded due to partial deafness already in my left ear. Then the noise started really bad. I was told it was tinitus. I gradually got walking again but for a few months was really weak and sometimes the noise was so loud. Now I get an intermitant numbness in the side of my head centering on my right ear and extreme dizzyness which passes pretty quick. The numbness is there most days and the noise never leaves me ever. Soemtimes its really bad sometimes its almost silent but is constant. I get tired which makes me moody I guess but I try to hide it from my wife and Daughter especially from my Daughter. Just now the numbness is really bad and I am almost deaf in my right ear which seems to go hand in hand. I am on Prochlorperzine for the dizzyness and I think it helps when I remember to take it. I feel really blessed not to have died and it would appear a lot of people have it worse. I pray for you all especially the ones who never made it . God Bless Jason

Posted on 22 October 2012

Comment by Jennifer M.

I was in intensive care for over 2 weeks with bacterial meningitis when I was 2 years old. I ended up recovering 100%, despite what the doctors feared.

The only "side effect" directly after recovering was my extreme fear of doctors. That went away after a few years, too.

I developed severe migraines in middle school, and I still occasionally suffer from them. They aren't as severe as they used to be--I would black out when I was younger.

But the memory loss has been difficult for me. I started noticing it in High School. I'm now 22, and my memory hasn't gotten any better. Short-term memory loss isn't an issue, but things from even a year ago become very foggy. My childhood seems more like a dream than reality.

I always wondered if these things could be attributed to the meningitis. I'm reading that a lot of people experience similar problems--so possibly. I will be doing more research.

Posted on 15 October 2012

Comment by Susan T

I had spinal meningitis when I was 3 months old. My mother said it was from strep.She had double pneumonia and pleuracy (sp?) when she was pregnant with me and I guess gave me strep after I was born. (?)
I was lifeless when she brought me into the doctor's office and they escorted my mother and I out a back door and to the hospital. They confirmed meningitis through a spinal tap and the drug I was given was chloromycetin (hourly). She was told the drug could kill me, but it did not (she had no choice because without it I was dead.). She was also told I would have permanent brain damage.According to her, I went blind and deaf. I can see and hear, now, but I am extremely nearsighted.
I, too, have always been concerned with memory loss or remembering only some aspects of my childhood, while others could remember every detail (even my 96 year-old grandmother, when alive, could remember when she was 3 years-old!) As I have gotten older, my memory or *absent-mindedness* has gotten worse.I did get an ADHD diagnosis late in life (I am now almost 47 and I got diagnosed a couple of years ago) and was told that stress (I have 5 kids!) exacerbates (worsens) the ADHD and memory issues. I have to keep a calendar/date book to remember appointments and it does seem to be getting even worse as I age.
I am now on generic Adderall (amphetamine salts)for memory/ADD and also weight loss.
Before this, I experienced what my neurologist calls "jamais vu" (driving down the road and forgetting where I am or where I am going...kinda scarey). Usually I was with someone,like my kids, to remind me what I was doing. Yesterday, I was by myself, and when I *snapped to* and realized I had gone WAY past my destination, I felt disoriented (hard to explain...I knew where I was, but not sure how I got there when I was going somewhere else) and later felt nauseous. Since yesterday, when it happened, Ihave felt tired and a general unwellness that I cannot classify or explain, but otherwise I feel fine. I have also had Deja Vu in the past(younger years, mostly). Now, I am starting to entertain the idea that this may be partial seizures I am having.
Using my medical background and research skills, I have found this could be the case, and if so, this has been happening to me for years!! Ever think you smell something that no one else does? Could be a seizure and you could be fully conscious. I will be phoning the neurologist in the morning and making an appointment for an MRI.
Never attributed all this to me having meningitis when I was three months old, but it is entirely possible.
Oh yeah, I have peripheral neuropathy (where it feels like someone sticks you with a needle in your arm or leg and your extremity jumps....had it since I was a kid and no, I cannot remember what age it started), arthritis (fixed mostly with a gluten and casein free diet), restless legs, and sometimes severe pain in the back of my head (where I want to be left alone in a dark room with no noise...brings me to tears and lasts for about 30 minutes...again, can be seizure related.)

Posted on 12 October 2012

Comment by Stacey Denby

Hi. My name is Stacey. I am 41 years old and have been suffering from numerous symptoms for most of my life, particularly with fatigue. When I was 8 months old my mom rushed me to the hospital with a fever of 107. The doctors took me from her and put me in isolation for 10 days. A nun told her she couldn't stay and that she had to go home. There was nothing she could do for me. 10 days later I was sent home with my mom but was always a sick child, in and out of the hospital for numerous things like croup, severe ear infections and tonsillitis. My mom was never told what was wrong with me. I can only assume that it may have been meningitis. I was a happy baby but a very withdrawn child. I was always in pain, which doctors said was "growing pains". I suffered from depression which was said to be genetic. As I was in my 20's, my hips and legs would hurt so much and again, always tired. I didn't do that well in school and always assumed it was ADD. When I was 35 years old, i suffered from a mental breakdown and severe psoriasis and was diagnosed with bi polar disorder, which was later misdiagnosed. A couple of years ago, I had to go for some tests through my job, for TB. I had a reaction to the TB test and was asked if I ever had TB or had ever been exposed to it. I had no idea. I decided recently to do a little bit of research and talk to my mom about what she could remember and think that I may have had TB meningitis, which I have read can effect the brain and spinal cord. Of course, the hospital has no records from 1971 in their files and they have been destroyed, so I will never know what I had, if I had seizures or if I was in a coma even.

My symptoms include constant fatigue, numbness in my legs and arms, horrible circulation in my hands and feet, numbness on the right side of my face, constant twitching and muscle weakness. At times I feel "drunk" and impaired, with dizzy spells and nausea. My short term memory sucks and often forget things or forget what I am talking about in the middle of a sentence. I have also experience loss of sight from time to time in my left eye. Doctors don't take this serious enough. I have had MRI's for MS and seen a neurologist as well with nothing coming back. It is so frustrating. I am sick and tired of being sick and tired! I love life, I love my children and have a good husband. I consider myself a very positive and spiritual person who is so grateful for the gifts that God has blessed me with. I just want to feel "normal". I am tired of doctors telling me I am depressed or that I am fine. I may look fine and healthy but I don't feel it, no matter how hard I try. I feel like I am fighting this monster inside. I want to live the best life that I can with my family and friends. Again, just tired of being sick and tired. I am so happy to have found this website and to see that I am not the only one going through this. It sounds as though, for the first time, I may have an answer :) Bless you all :) staceydenby@gmail.com

Posted on 12 October 2012

Comment by Temwa Gondwe

in march 2012 was feeling severe headache, vomiting . at first i thought its malaria and the n when i went to the hospital, after some test the doctor found out that i had bacterial meningitis, was admitted . whilst in the hospital i could see things upside down, i had a memory loss and was confused and had loss of balance i could not walk on my own. after some 3 weeks i lost my hearing. was in the hospital for 3 months. got discharged and now everything is back to normal except i still cannot hear on my right ear and my left ear got problem with hearing a speech, am able to hear that one is speaking but to understand what is being said is difficult unless i lip read them. will be turning 32 in december. i still see an improvement on my left ear but the right one is still deaf. am only hoping for GOD to work out miracles for me.

Posted on 12 October 2012

Comment by Beth Menig

Part 2. Sorry for the multiple entries; my computer didn't seem to be sending.
Back to the shaky hands...Imagine someone coming at your arm with a needle to draw your blood with there hands shaking. Yeah, my last school was for a certificate as a Phlebotomist. Finished school and got my license, but never could obtain employment.
There are many other issues, but I see that many of us have the same complaints. I just don't understand why physicians can't take in the facts about having had Spinal Meningitis, and the possible effects that are current
symptoms.
Good luck to all.

Posted on 09 October 2012

Comment by MRF Helpline

It is well known that having meningitis can have long lasting effects, including some that are less obvious and harder to explain. Check out our what happens next booklet online to find out more: http://www.meningitis.org/assets/x/52217

Posted on 06 October 2012

Comment by Diana Fleming

Sorry and I am still not sure on the spelling but ASPERGER SYNDROM. I am in Fountain Valley CA. God Bless You.

Posted on 04 October 2012

Comment by Auburn Tiger

I feel really blessed to be writing on this board. I had Septicemia infection/meningitis when I was 22, currently I am 31. It took doctors four weeks to diagnose this infection, I think I slipped into coma one night. Thank god, I recovered very successfully and didn't have any side effects. I finished my Bachelor's, Master's and currently planning to wrap up my PhD. I thank my parents, friends and doctors for being very supportive during my hard times. I thank god for giving me one more chance.

I am writing all this here to present a positive perspective and provide a ray of hope for people who have been diagnosed with Meningitis. However, I may be extremely lucky to be in this spot.

Posted on 03 October 2012

Comment by Sarah Rose

Hi my name is Sarah I am 27 years old in 1989 I got Spinal Meningitis I was rushed to a local children's hospital where I fell into a coma and my parent's were told that I might not make it through the night. Since I was a child I have had pain in my legs and arms and I would get sick very easily. Now that I've grown up these problems have only gotten worse my body aches all the time so bad that I can't sleep. The pain that i have is in my arms, my leg's, the upper part of my chest into my arms making them go numb and terrible headaches. I am trying to find out if there are long term side effects of Spinal Meningitis and what the side effects are if any. i am also trying to find out if the medication that was given to me in the hospital for the meningitis was something that could cause these side effects in a long term view. If anyone could help me it would be greatly appreciated!

Posted on 01 October 2012

Comment by Gloria Sungu

every time I think of it, I feel depressed. I felt alone till now I still cant believe that there are so many survivors. I saw myself reading the comments.
The more I grow up the more side effects seem to get. I too suffered as a baby and now that I am 24, i can definitely say that the future worries me. I would like to find cure and people to talk to as I am so fed up with taking medications which will never cure and feeling this

Posted on 27 September 2012

Comment by Catherine Bates

Hi my name is Catherine, I am 20 now but when I was a baby at 8 weeks of age I contracted Bacterial meningitis. I was in hospital for a long time and my parents were told that I would probably not survive. I survived but the doctors said there was a high probability I would have brain damage or other disabilities. I was lucky and escaped without any brain damage, although I have some nerve damage through the left side of my body e.g I don't have much muscle control on the left side of my face and my coordination on the left side of my body is terrible. I think that others have come off a lot worse or not at all and a lot more funding should be put towards finding a cure for this disease. My best to anyone who has been through this or has to live with the outcome of it.

Posted on 27 September 2012

Comment by Marie Stone

I am dumbfounded at all of the comments. I have never attributed all of my issues with the after effects of Spinal Meningitis. For some strange reason, this morning, I was wondering if there were any after effects of the disease and started looking online for the answer and came across this website. I had spinal meningitis around 3 years old. I too, like most of you, was at deaths door. Am now 65. I have suffered all of the above symptoms other than migraine headaches. Always struggled in school because of memory loss. Knowing that everyone else could remember things made me feel stupid as a child in school. Every job I have had has been a struggle. I was a constant note taker in order to be able to function at work. I have always lived by a calendar. Without the above aids I would not have been able to do any job. Somehow I managed. I will say that I am rather tired of all the other maladies. Just to have even one day without all of the above would be wonderful. The worst is the memory loss. Up until now I have been worried sick about the possibilities of Alzheimers kicking in. I guess given the choice I would pick memory loss due to menengitis. Good luck to all of the above.

Posted on 26 September 2012

Comment by Stephanie

At the age of 5 I was diagnosed with meningococcal. I am now 16. I've never been the healthiest child, I would get infections from little things like carpet burn which once got me sent to hospital for a period of time. I don't really feel pain in my limbs, when playing around with friends I can easily handle a hard punch into the arm or a Kick to the leg which leaves people worried haha. I've always had a loud ringing in my ears, it's worse in my right ear. The doctor has just said its because of sinus problem. And it effects my sleeping greatly. I don't really know if any of this has anything to do with meningococcal and my mother, doctor and friends say some of it is just in my head. And I'm pretty sure it's not. Ive suffered from mild depression all my life and it got much worse when i got into highschool with all the pressure and judgements. I just wanted to know if anyone else is the same and if I should get any of these checked out. I've stopped going to the doctor because I've been worried she will think I'm just making it all up.

Posted on 23 September 2012

Comment by J Powers

My name is Josh and I contracted bacterial meningitis in 2003, when I was 25. (i am 36 now) I went to the doc for an ear infection that was so bad that it was pouring yellow out of my ear. Doc gave me some Amoxicillin and sent me home. For the next 3 days I thought I had a bad migraine as I had them for days as a child, and had excruciating ear pain and headache. I thought however that only a day had passed when it was almost 4 days and I no longer could recognize anyone or speak. My girlfriend at the time called my Mom and she came and took me to the hospital. They attempted to once again send me home for an ear infection but my Mother insisted on a spinal tap and MRI as I was in and out of consciousness. Not only did they find advanced bacterial meningitis, but my sinus, ear was severely infected, I had pneumonia and Cholesteatoma. They performed a Mastoidectomy on my left ear and put me on intravenous antibiotics immediately. I guess I was in a coma awake as they call it, because I could not speak, understand people or talk and I was having extreme hallucinations such as the walls turning into a forest. The hallucinations came when I began to regain my speech about 6 days after being admitted. I hallucinated flying words that changed at film speed, which seemed like my brain sort of re-booting. I was released from the hospital about two weeks after being admitted but was sent home with intravenous antibiotics and a nurse. After months of recovery, I noticed that my reaction time was still effected, my memory wasn't as good and I have chronic fatigue and depression. a year later i was diagnosed with Common Variable Immuno-Deficiency, which is a rare immune disorder. I had been sick all my life leading up to the meningitis but things only have gotten worse as I had a bout with Neutropenia that lasted about a year that i am still recovering from and I now have Bronchiactisis because of having pneumonia so many times. I still struggle to talk or call up peoples names that I know very well sometimes and have difficulty motivating myself as I often wake up tired. I feel so deeply for all of you, I hope your conditions get better. I feel your pain and thank you for sharing your stories.

Posted on 22 September 2012

Comment by Sophie Davies

Hi my name is Sophie, I'm 28 years old. I contracted Bacterial Meningitis at months old as the result of being misdiagnosed with conjunctivitis. I then went on to develop septicemia and slipped in to a coma for 2 weeks... I obviously don't remember any of it, being just a baby at the time. I've been reading up and learning more about the disease recently and am realising how incredibly lucky I was to come out of it in tact with my sight, hearing and all of my limbs. I am however very interested in learning about any known after effects that have been found later in life... I have notably suffered with depression and other mental health issues since my teens and am wondering if there could be a link between the two... If any one knows where I can find more research/ information on effects later I would be very grateful to know.

Posted on 19 September 2012

Comment by jessica martin

I got spinal meningitis when I was 6 months old I am now 19. The doctor told my mom that I wasn't going to live so she called in the family. I was very contagious. After surving a period of time in the hospital the doctor also told my mother that if I lived I would be disabled. Wouldn't walk talk hear ect. I wasn't expected to live to the age of 13. I wear glasses, I'm half deaf in the left ear, I walk fine, I did have a speach problem and was in special ed until high school. I'm a high school graduate I'm a certified nusrse assistant going to college for medical coding and billing. I havnt had any other problems with my health until about a year ago. I have a cronic daily headache and I have undiscrabale pains in my pack and legs. No doctor can figure out what it is so iv ben covering it with pain medication. I'm sick of covering it up and feeling like I'm crazy! I just want answers. I feel so much better knowing I'm not alone.

Posted on 18 September 2012

Comment by Timothy Gant

My name is Tim and I am 30 years young. The problem that I am having is that I am 30 and I am walking like my late grandfather, with chronic lower back pain. I've had x-rays to rule out disk problems and chiropractic adjustments. I just recently started to wonder if my issues are a result of having bacterial meningitis when I was 16 months old. After talking with my parents, they told me that as a young child I had several doctor visits simply because they were concerned about my posture. I always stood with a hyper-lordotic curve of my lumbar spine. I found this website and found it interesting to see so many other people with problems later in life that may be related to meningitis at a young age. I wonder if there is some truth to this. It has come to the point where my back pain is chronic and unbearable at times. Is there anyone else out there with a similar story? If so, how have you managed, or what has been your diagnosis or plan of treatment? Thanks for reading and good luck to everyone out there. Thanks.

Posted on 18 September 2012

Comment by Sarah Louise

Wow, everyone. How incredibly moving to find that there are others like me out there.

Found this forum after manically searching the web for answers. I do this often out of frustration. I have yet another headache tonight and I'm out of migraine pills. Oh I hate taking those pills. I wish the doctors would take me (all of us?) seriously!

I had Bacterial Meningitis in 1987. I was two. Was septic by the time I was checked into the hospital and not expected to live. But I did live. I spent three months in the hospital and was one of the first to try out a version of the vaccine.

Yes they thought I would go deaf, they thought I'd be mentally crippled -- they were looking for something outwardly obvious.

I remember crippling joint pain beginning around age 9. It started at the base of my spine and traveled upwards. First it was "carry a lighter backpack", then it was physical therapy, then it was a long procession of pills (everything from muscle relaxants to neurontin). Biofeedback. Acupuncture, acupressure. The assertion that it was all in my head. It is not all in my head. Now it is everywhere and it shows up on xray.

Like others have noted, my torso is quite short for my body. My spine curves horribly. It's like it can't quite fit.

I also suffer from chronic sinus infections, ear infections. Everything infections. Kidney infections so bad I end up in the hospital for days. Once, I cut myself on a rollerblade and promptly came down with cellulitis. If all this didn't hurt so badly, it'd be sorta funny.

I've always been called a daydreamer. I struggled in school due to my inability to focus. I've recently been diagnosed with ADHD. My short term memory loss seems to get worse and worse over time.

I am skinny and cannot seem to put on weight. Even the doctors assert that it must be because I'm a girl and I suffer from the pressures of girldom. But oh, what I'd do for the strong arms of a talented swimmer.

The muscle mass in my back has significantly decreased over the past 5 years or so. It makes me look even thinner, sort of "fragile". I think it's the cumulative effect of a life spent battling inflammation. (I'm not fragile, I'm actually a total bad*ss.)

Of course of course of course there is depression.

But I won't give up. Although I cannot perform the butterfly or even the front crawl like I used to, I will keep at it. Seeing all of our stories collected here is an encouragement. One day, perhaps, solid research will occur that'll have doctors connecting the dots. Until then, my friends, we've got to lean on each other, and hang in there.

slouiseallen@gmail.com

Posted on 16 September 2012

Comment by Ron

Had the bacterial brand in 2nd grade. Was hospitalized for days and don't remember much about my stay. I have always had a terrible short-term memory and I do not do well with details at all. I have an MBA but my inability to focus in on detail has been a very frustrating and humbling problem experience in the workplace. My written communication is poor. I have real problems trying to check for and seeing even obvious errors. Worked hard on this little note. My hearing is getting worse and I always have a low level ringing in my ears. Learning new things is best managed by observation and doing.Depression has been a life long event with only intermittent relief. Used to paint houses and wondered if I breathed too much paint dust and have lead issues causing some of these issues.Who knows.

Posted on 13 September 2012

Comment by Johnny

All these stories show we are not alone. We all suffer in different ways. My story started in 2005 aged 42. I got Mumps and it was horrible enough. I went on holiday to South England 7 days later when I thought I was better. Three days into holiday I ended up in Hospital for 7 days with Viral meningitis. I was ready and prepared to leave this world, I was so ill. My short term memory was affected , balance and sensitivity to noise. I was off work for 6 months then convinced myself to return to my Bank Job. I lasted 1 year sleeping up to 18 hours at the weekends to recover. Naps at work and falling asleep whilst stopped at traffic lights convinced me I was getting worse.

I am left with terrible headaches, constant fatigue and IBS. I was diagnosed with Chronic Fatigue Syndrom and referred to hospital Consultants who gave me CBT and GET to no avail. I have now been medically retired at age 49. I refuse to let this illness beat me into depression. I now pace my life accordingly. I recognise the symptoms before I relapse too much. I joined a bowling club to meet people. Have the odd half game then rest.

My advice is read your own body and plan ahead. Easier said than done!. Be all you can be. Know your limits. I was dealt a bad hand but I will not let it destroy my life.

My thoughts are with you all. God bless!

Posted on 11 September 2012

Comment by Chris Crossland

Hoping to comfort Kerrie and any other mum whose child has had meningitis.
My son had Meningococcal (bacterial) septicaemia at age 3. He was given the last rites and wasn't expected to live.
He made a full recovery, and his medical follow-up pronounced him fit and well.
He is now 41, in full employment, married and has two great kids.
Over the years I have worried about some things, for example I don't think his circulation is quite up to par - particularly in his hands. His short term memory is poor, but not disabling. He speaks rather loudly (? hearing) and his impulse control could be better. As you can see, all these things could be attributed to other causes, and I don't share my concerns with him as I don't want him to feel in any way impaired (but would if anything serious cropped up). All in all we have been lucky I know, and my heart goes out to those suffering for so many years, but it isn't always that bad.

Posted on 10 September 2012

Comment by Gail Hobby

I havent even read one fourth of the entries, but I will say, my daughter is 17 years old now. At 5 months old she contracted meningicocal meningitis. Bacterial is awful. We were in the hospital almost 3 weeks, and luckily, she pulled thru. From toddler until this day she has had issues with joint and bone pain. I mean crying so hard cause it is killing her pain. And headaches, and probably other things that we passed off as common crap. I have thought since day ONE that her meningitis was the cause, especially for the joint and bone pain. NO FLIPPIN DOCTOR WE HAVE EVER SEEN WILL AGREE WITH THIS!!! I think there needs to be some kind of study on people who contract different types of this ailment. They may can learn alot more about it. Today I found out a sophomore at my daughters college died from this same meningitis. She is on her way to medical as I type this, because the bacteria is going to always be there, and better safe than sorry. Does make me angry though that Drs will not listen to us when we know full well why things happen, it is too much to see all of these posts, people going thru the same thing, but no, it isnt because of meningitis...whatever! I hope one day we will all have answers.

Posted on 31 August 2012

Comment by Maureen

I had bacterial meningitis at age 8 I am now 64.
I have been touched and amazed at everyone's stories. I recently visited a homeopathic health worker who suggested that some of my health problems may be due to having had bacterial meningitis.
I found this website.
I have had headaches most of my life. I took so many pills I was told to stop and now take an Endep at night.
I have had Chronic Fatigue since 2005 and I am getting there but it flattened me.
I have many of the things others have mentioned -
Bullied at school and called "mad" because someone's mother knew that the decease inflamed the brain membrane.
I have struggled all my life - concentrating, getting exhausted etc etc.
Struggling to finish a sentence.
I am just saying that I will now be thinking of all of you and hope everyone can improve.

Posted on 29 August 2012

Comment by violet Storm

I was diagnosed with spinal meningitis at 6 Weeks old. I was in the hospital for 3 Weeks. I Now have migraines, epilepsy, fibromyalgia, rheumatoid arthritis, two blood clotting disorders, depression and a few more diagnoses. I have the same complaint, I feel like doctors think i'm crazy. My neurologist did tell me my seizures were a direct result from meningitis. I even had a stroke. I'm Sad to see so many others suffer but it is comforting to know I am not alone or "crazy".

Posted on 28 August 2012

Comment by Andrew McGinness

My Bout with spinal meningitis came on when I was 5 yo. I was never taken to the emergency room, only my primary care physician, as I lived with my grandparents and we had not the assets to afford a hospital visit. This was xmas of 1987, Im 30 now, and have known the side effects of this virus for most of my life, as I have followed my intuition, knowing that the fda, and academic medicine would never admit there were side effects of such a benine virus. the long term effects have been staggering- chronic fatigue, apathy, forgetfulness, depression, osteoarthritis, weakened immune system, chronic pain, mania, and my all time favorite meloncholia. I have adapted quite well. with a proper diet and exercise, I definitely think I will have my good days back in order and bad days, less frequently, a good day would entail remembering to eat breakfast and shower. A bad day would be me feeling too weak and hurting too much, to get out of bed. I have taken all forms of illicit and non illicit substances in my quest for a pain free life, I have tried all forms of anti psychotics and anti depressants to combat my depression and mania, and to no avail. they are worthless. absolutely. analgesics in high doses work at a somewhat paradoxical level, in that I dont feel the effects of over sedation, I feel very energized, easily exciteable, (MAYBE this is what normal is like?) My wife of ten years has been outstounding, in that she helps me tremendously, and I doubt I would have survived this long without her. My only advice to others is to follow your intuition, the doctors do not know what is best for you, only you do. mIf anyone wants to contact me with their advice or own ideas on how to combat the fatigue and chronic pain, please feel free. amcginness13@gmail.com

Posted on 21 August 2012

Comment by Ema Nympton

I had meningitis when I was 2 weeks old. I was in the hospital for 2 weeks. My mom always told me that I was a miracle. She prayed to God that if he let me live and be healthy, she would not have any more children. I am an only child. I never had any developmental problems other than needing glasses at 10 years old. I am now legally blind, but can see 20/20 with glasses and contact lenses. I have been overweight since I was 6 years old, but I attribute that to being sexually abused by my aunt since I was 4 years old.
When I was 26 I had an incidence where I could not move. My body was like concrete and I couldn't move without pain. I would go in a hot bath or shower and it made it worse. I didn't have health insurance and I was afraid of doctor's bills, so I tried to just wait it out. I researched in on the internet and thought it may have been arthritis. I started to take Aleve and it made me feel better. I gradually drifted away and I still am not sure what that was. I has not returned, but am always afraid of it coming back.
I am now 35 years old and my thumb has begun rapidly twitching from time to time. It started about 2 weeks ago and have been trying to monitor it to see if it will go away. Today, I thought I would do a search about it and came across this sight. I had never thought to tie my menigitis as a baby to these instances until today. I had always thought it was just something I survived as a baby and didn't think of the long term. I suppose we don't know what the long term side effects of meningitis are. I am going to give this thumb twitch a little more time before seeing a doctor.
My weight is about 100 pounds over normal and I am not active. I know this is a cause for a lot of bodily stress. I am just hoping my twitching is from a nutrient deficiency.

Posted on 20 August 2012

Comment by shirley gieron

If you live in the UK or Ireland for support and information whether you are living with the after effects or bereaved as a result of meningitis and septicaemia - please call the freefone helpline 080 8800 3344(UK) 1800 41 33 44(RoI)

Posted on 20 August 2012

Comment by crystal gonzalez

Hi its me again didn't finish my story earlier so my parents would spend countless hrs at the doctor without me when I first got sick. The doctor told her I was fine even with my eyes rolled back and stiff as a board. So my mom took me to the er and finally I got the help I needed and I was 8 months old back in 84. I was to the point were I couldnt eat for two months I had a feeding tube in my throat. Eventually I ate and had a bottle with special formula till I was two. I'm cross eyed but only when I look at something a certain way always body aches I get depressed a lot I don't feel understood a lot of the time and I get made fun of I need someone to talk to that's going through the same stuff. Because a lot of the time I feel alone I suffer all the time with something and its hard to hide the pain

Posted on 17 August 2012

Comment by JOhn Whitehouse

I just found out i had meningitis when i was a child, and tongith found out the seizures I had could very well have been caused by it. I have migraines now and htey have recently got so severe i cant concentrate/and or am dizzy, nautious, or in terrible pain. In the past 8 months I have worked 3 of those months and missed 2 straight months, then a couple weeks then days here and there until I finally ran out of fmla nd lost my job. is this something I should include in my disability claim with SS administration or is there no hard proven case study that confirms that these migraines would be linked to that illness and a toddler? email me if you know the answer an possibly a link that shows that there is a viable link to migraines and other symptoms as an adult and meningitis as a child. THank you for any information I receive.

Posted on 07 August 2012

Comment by Cynthia Burke

I had menengitis about 21 years ago, at age 36. I was unable to touch the top of my head for over 15 years later without severe pain. I still cannot stand strong light, and, strangely, my hearing changed so that I cannot listen to music, especially the music often piped into stores. There is a brain-piercing buzzing screech in the background of that is like nails on a chalkboard to me! I also have memory problems, and cannot recall many, many years of my life. Being a single parent, this disease has taken a terrible financial toll on both my life, and my daughters. My health all around has never recovered, but, the 5 other people who got it the same time I did died, so I guess I am lucky as far as that is concerned!

Posted on 07 August 2012

Comment by alan

I was 19 and an engineering apprentice in the Royal Navy,studying hard and having the time of my life when I fell ill.I tried to carry on for 2 days before going to the MO.I had bacterial meningitis,spent 3 weeks in a coma.The first words I remember hearing was a nurse say "we didn't think you would make it".I have never been so hungry as I was then and I will never forget my first meal of ham,egg and chips.
My short term memory was useless,I was easily confused and very lethargic.I lost my self confidence probably due to only being able to mumble and my hearing became incredibly sensitive.I had a short temper and went into a long lasting depression.I didn't last long in the navy after that.
Not all after effects have gone.I still have memory problems and I have times when I just can't think,like a long pause.There are times when I have a clear thought but it's gone by the time I can grasp it.
I try my best to avoid situations where contact with more than a few people is involved and find it easier to let my workmates think I'm just strange.
BUT,I love my wife and she thinks I'm the best.I will be 48 this month and have never been out of work.Things got better in my head when I stopped trying to get back to the way I think I was.
It's taken me 2 hours to write this,I hope it helps someone

Posted on 02 August 2012

Comment by Brendan Baumgartner

Very inspiring to hear all these stories. Like many of you or people you know, I had bacterial meningitis when I was 7. I haven't felt quite the same since. Depression, anxiety, learning disability, I struggle with it all. It never really occurred to me it could be linked to a disease I had 10 years ago but I'm starting to think it may. I pray God will help us all through and thank you guys for the encouraging stories!

Posted on 01 August 2012

Comment by MRF Helpline

We hope that Missy and Sherri found the information sent to you each helpful, we welcome discussion on our blog. Our helpline is available on freefone 080 8800 3344(UK) 1088 41 33 44 (RoI) or email helpline@meningtis.org

Posted on 01 August 2012

Comment by Sherri Barrow

at age 20 I developed meningigtis and about 5 years later my health started to decline. I developed seizures, migraines, numbness and periods of paralysis on my left side, bladder problems, memory problems, slurred speech, mixing up words and often am not able to get words out at all. muscle weakness that has left me wheelchair bound. chronic pain, difficulty swallowing, balance problems, hearing and vision problems, ringing in ears, manuel dexterity problems, trouble understanding things both written and spoken. so i have all of this and doctors have no answers, it is incredibly frustrating! I think many of these things are caused by having meningitis. I am 32 and require constant assistance if I didn't have my good friend I would be in a nursing home. thanks to everyone for sharing their stories, i'm sorry for your experiences but it is a relief to know I am not alone.

Posted on 31 July 2012

Comment by Missy Carlock

my name is missy. when i was 8 years old i got meningitis. I was so smart before i got this desease. i sufferd a learning disability and have never recoved from it. I really want to go to college but i am at gradeschool levels on most of the pre-recks.iI am so embarrsed. what can i do to heip me learn and retain what i learn.

Posted on 30 July 2012

Comment by joy gilbert

Thank you to everyone for sharing your stories. It's hard to go through this, but it's, in a way, comforting to know that we are not alone. I had viral mengitis when I was 7. Since then I've developed seizures, chronic fatigue, difficulty walking, etc., etc. Having support through family and/or friends is most important, especially when we go through those "rough" days. Days when we can't think straight, can't walk without looking drunk, and just plain find it hard to exist.
We are all in this world for a reason, and it is said that God will never give us more than we can handle. He must think we are all very strong!
Keep going, and don't give up. I haven't!

Posted on 17 July 2012

Comment by Jenny Malone

Hi
My son had meningicoccal meningitis at age 4 and is now almost 14. I am just finding out through this website that his learning difficulties are likely a result of his illness. He also seems to take forever to get over colds and other small ailments, he has aches and pains and seems to crash and burn after exercise. Sometimes he ends up in bed for days with fatigue and has even lost feeling in his legs after a cold only to return 48 hours later. I am wondering if there is a link with chronic fatigue and meningitis?
I also would like to know if anyone experiences morning nausea if awoken from sleep? My son vomits most mornings when school is on and an alarm is set. He can not tolerate food or water for at least 3 hours upon awakening. He has suffered with this all along. Does anyone else experience this morning vomiting/nausea ?
Jenny

Posted on 15 July 2012

Comment by Terri Hernandez

I am 41 now i had spinal meningitis i was 36 i didn't know who i was i didn't know people around me i went to the E.R. about 5 times they turned me back each time saying nothing was wrong with me but i could not walk very well i had to use a can then a walker then a wheel chair . from what my mother told me i went in to acoma i was flowen from saint joesph mi to detorit mi i woke up thinking i was being kid napped because i was what they call an awake coma and i would see of the ceiling change the color, or tiles, ot painted because i was being move from different hospitals at one point my mother was in my room and all the doctors where there she YELLED my name ( you know when your mom calls you , you better answer so i moved my head up and down like saying yes // the to doctors where shocked at one point they told her i would e a veg. and would all ways have to be taken care of then one day after little over a month i woke up . like i had had a nice long nap , but i was in bed and i was not able to move i felt like from my toes to my fingers where all aslleep because i was tingling then i had to learn how to walk all over again my 30's i stared with a wheel chair then a walker , then a cane now i can walk but my balance is little off i have to get therapy 3 times a week still but the tingling is gone from my fingers and hands but still in my toes and feet and when i drive i go to the right still alittle been pulled over a few time because they think i'm drunk ( i don't drink ) but i rember my past they say a cm. of your nevers grows back in a day so i'm thinking all the tingling will be gone when about 100 if i live that long BUT i'm alive not a Veg. and i belive GOD only gives you what you can handle and if i can handle this i'm ready for anything

Posted on 05 July 2012

Comment by Angela

I found this because I was searching for long term after effects. I had spinal menigitis at 2 and then bacterial menigitis at 32. I was in the hospital for a month and had to complete extensive rehab for 3 - 4 months. I don't remember much of my childhood and I have never been able to focus in school even as an adult. I appear to be normal like any other kid expect for low blood iron all of my childhood and being a small girl growing up, especially compared to other children. I felt bad for Dylan the 13 year old is tired of everyone asking "what happened to your legs?". I get that question alot. I had a doctor tell me just be thankful you are alive. duh like I didn't know. I just want to say don't be ashamed. Every time you look at your legs remember that God has something special planned for you. There is some greatness out there for you to live up to. People are curious and even ignorant but you are special and will be doing things in the near future.

Posted on 26 June 2012

Comment by Anu

I am praying for all of you who is going thru this sufferings. I want to know few things about meningitis
1. My fren brother is suffering from Meningitis from last three years.
2. First time he was into coma and got recovered in 6 months.
3. Again he is into coma from last 2 yrs.
4. he is 32 yrs old. from continuously 3 yrs he is suffering.
5. Any one can help me how we can recover at least from coma.

regards,
Anu

Posted on 20 June 2012

Comment by Dylan Ryan cornell

Hi my name is Dylan I had memengitis factor five when I was five years old I am now 13 years old and have barely gotten through life feeling pain as I went through the years of bullying and ignorant kids and adults. Sometimes I feel that I was the only one trapped in this world with this virus. Has anyone ever felt what I have went through over the years. Especially when about 1 million people have asked me this question many times "what happened to your legs" I always get emotional because I always picture seeing my mom and family for the last time while I lay in that hospital bed dying and seeing light. I just want to be normal again. I don't want to go through the pain anymore. Does anyone kno if there is anyway I can look normal again.and if anyone has or knows a kid that has gone through this virus look online at te hole in the wall gang camp a camp for sick and I'll kids. Thanks for reading please message me back if you know how to look normal again at dcornell17@hotmail.com

Posted on 06 June 2012

Comment by Annabelle Susan Clarke

Hi my name is Annabelle. I'm 39 yrs old. I contracted Tb spinal meningitis when I was 7yrs old I was in hospital for 18 months flat on my back I was not aloud to sit up as my eyes would roll back into my head I would have lumber punctures everyday which was agonising for me and today I still have the scar where a the lumber puncture use to go. Today I suffer with chronic pain in my back and have been diagnosed with three collapsed vertebrae and three slipped vertebrae. I also have little diagnosis not being able to conceive a child was my hardest after being married to my husband for 16 yrs we have 2 beautiful children who we adopted when they were babies my husband constantly worries about me but he also knows that I'm strong and strive on with life with all the doctor visits and walking out not knowing what is wrong is disturbing could these little medical haps be part of after affects. Positive out come I plan on being around for a long time.

Posted on 30 May 2012

Comment by Gaye Weinman

I had meningitis at 7 y.o. I am now 65. I have suffered since my teens with terrible headaches. I am wondering if my having had meningitis could have anything to do with these horrendous headaches (they are not typical migraines, but just as painful).

Posted on 21 May 2012

Comment by Karrie

Hi my daughter got bacterial meningitis at a week old, she was in hospital for two weeks and was touch and go, she pulled through and had been fine, she has had a small seizure which I am now watching to see if she keeps getting them, I was told this could happen due to the illness at birth. Hearing some of the stories of the struggles in life after having it does worry me, the thought of not knowing what might later occur in my daughters life. I don't think there is enough information on it and people don't and can't relate to it until they have gone through it. Sadly it looks like it effects the rest of ur life. Such a horrible illness to get, but in a positive light a lot of us are lucky to have pulled through thanks to great doctor and medicine, my thoughts are with those not so lucky x

Posted on 15 May 2012

Comment by Nate Bishop

wow ty 2 all 4 all the stories and conformation on facts about each of u. Meningitis is a vicious disease that affects each person just a little bit different, for the most part with basic symptoms. My 8 yr old came home from schl with sever neck pains and a swollen eye (eye brow) protruding out ward. From her neck down her back and into her little ankle had joint / bone pain that could not be described. She suffered from a headache and just feeling bad all round. Took her to the Hospital which only diagnosed Strep throat and sent us home. She had a fever 104.9 and could not stop vomiting. With every move she made, she screamed in pain. I carried her to the bathroom because she could not walk without pain shooting through her body. It was the worst Month ever. After the first Hospital giving antibiotic ... nothing changed and it was continuing to worsen. A second Hospital also failed to diagnose Meningitis and just issued steroids to numb the pain in the bones/joints. That did not work either!!! Pain continued viciously and so did the vomiting and fever !! Third Hospital C H O P Children's Hospital was the diagnosing Hospital that told me yes she has Meningitis, BUT because she was given antibiotics there may be nothing to grow and determine which strain of it she had. They were only able to say yes it started and entered through the sinuses (a sinus infection) With that, she had sinus Surgery to help the infection drain from the sinuses above the eyes (which was the original part of symptoms with the swollen eye brow) She had a Right eye palsy which is blurred and double vision at times. With Hope and Prayer That will clear up as time goes on. My daughter is now 9 and continues to have headaches and her joints/bones continue to ache. She will see specialist for some time to look for "after effects" of having Bacterial Meningitis. We all have MRS & Meningitis living in our nose. That's where it lives . Saline nasal washing is a must !!! Be Well and if you would like ... my email is Mrsnlbishop@yahoo.com.

Posted on 15 May 2012

Comment by Dodie Smith

Reading so many of the stories here, I can relate to so many and, in many ways, feel fortunate.
I had bacterial spinal meningitis at 10 months old in 1973. My parents noticed something was wrong when I had been fussing, so they put me down for a nap but I wouldn't wake up. My parents rushed me to the hospital. The doctors fought to keep me alive for the next 3 days as I had seizures and wouldn't wake up - I'm not sure how long I was in the hospital for, it was a traumatic experience for my parents so they have told me much.
The next 4 years of my life, I was in the hospital more than I was home due to severe seizures. When I came home from the hospital each time, I wouldn't remember who my family was,my own parents and siblings were total strangers to me.
By 8, my seizures had stopped and at 10, I could stop medication.
Despite giving my parents a lot of grey hairs, I was a pretty typical kid- climbed trees, road my bike, fished - I had learning difficulties, hearing difficulties, vision troubles and was clumsy but I thought ALL kids were like me. I mean I noticed some were better at sports nor did they need reading glasses at 10, but I figured they were the exception to the rule,not me.
I started to become self-aware as teen so I worked hard on my delays and seemed to over-come them. My seizures started again at 14.
Skip a decade, I married and had kids. Difficult pregnancy and delivers. But I was able to be active with my kids.
Skip another decade, in my late 20's, I started having a challenge doing everything I was able to do, slowly at first. I was hiking, walking miles a day, riding a bike, swimming etc. Slowly, first activity became a little harder to do.
2004 I was in serious car accident.
2006, I had sepsis 3 times: uruo-sepsis and twice c.diff.
In the following years, my legs begun to feel like they were made of cement. I began freezing up at night, completely unable to move. My vision changed significantly.
Doctors had every theory from it was in my head to MS. The tests didn't really help, they showed arthritis of my entire spine but it may or may not be the cause.
Skip to current, I'm 40 yrs old, I have seizures, I am legally blind, I have balance issues, I lose the ability to walk periodically, I can't walk but inside my on home anymore, and I have difficulty processing what I see and hear.
In 2011, I received a severe concussion because I lost my balance.
Last month, the doctor told me this is the combination of the meningitis, sepsis, car accident and concussion. Mostly the meningitis. I may lose the ability to walk. I'm afraid to see doctors and hospitals anymore.
You might wonder why the fortunate. Simply for what I do still have: some ability to walk, the ability to talk, enough sight to see my surroundings. That's more than some people here have.
Plus I have the love of my husband and two sons to grateful for. I hope everyone here has someone who loves and cares for them.
Best of luck to you all and thanks for listening.

Posted on 08 May 2012

Comment by Timothy Moseley

WOW... where do i start? not to sound depressing to anyone because that's the last thing we need with these already sad stories, what can i say ,i feel so sorry , no "normal" person could ever understand the pain and frustration of life after Meningitis (i still have trouble spelling the word) contracting Meningitis in the 60s in Barbados at 8 months old my whole 48 years of living has been a struggle and has gotten to the point where I'm not sure if I'll see the big 50.... It's not like you have cancer and you know that's what it is and that's it, they are so many different thing to deal with i don't remember ever hearing in my left ear, I'm 6 '1" and never weigh more than 160lbs my brother sexually abuse me for years because i was such a weak person and that's and that's a struggle in it self. I also have stomach problems memory lost that is getting worst with age and is starting to affect my job as a manager for Auto Zone i have struggle all my life to learn struggle thru 20 years of marriage that final ended three years ago, struggle struggle with everything every day of my life head aches poor vision I feel life i Can't handle life any more , my body is so tired , I'm so tired of the struggle , it's to the point where even this is hard to write , if i had to put every little detail of my struggle with Meningitis in here it would take for ever Again not to sound depressing to anyone cause life is a beautiful thing and you should live it to the fullest but this is awareness , this is a life that we have to figure out for ourselves hot to live and survive, there is no pill for life after meningitis .I feel all the pain cause i went thru a lot in 48 years , i wish we could all get together and talk, share life stories and experiences, God bless every one, be strong, strength is our Pill, listen to your body it will tell you what you need. Don't know if i can put a phone # here but 352 321 1046... Peace and love...

Posted on 08 May 2012

Comment by Denae Gemmrig

Hi Everyone!

I had spinal meningitis when I was 3. As I grew older, just turned 30, I wonder how the illness has effected me. I always knew I had loss on hearing in my left ear. I have severe skin and internal allergies. I have acne and rosacea. Sometimes I get mad and go straight into fight or flight mode. I am getting better at controlling it now. It takes practice and being aware. I would like to have clear skin. I don't know how to get my skin clear. I am allergic to a lot of drugs so I tend to go to a Holistic doctor. I don't have health insurance and I can not go to the doctor all the time because it gets expensive. Are there any studies being done?

Posted on 08 May 2012

Comment by putchay imla

hi, my baby got meningitis when he was 15days so now he got 10months and he behaves like a 4-5 months baby n am confused as his doctor never told me anything about his health, please help me please, thanks

Posted on 01 May 2012

Comment by ann kahlown

my uncle got meningitis 5 days back..he lost his memory suddenly otherwise everything is fine now but does not recognise any1..can any one tell how much recovery is possible in getting back the memory and how long will it take to atleast he can recognise who is he,his son wife and his kith and kin..

Posted on 30 April 2012

Comment by leilah bughaili

I am shocked when i read their comment...i didnt realised and no wondering why i got same as their...i was 5months old when i had meningitis and i was in hospital for nearly 2 year and find out i was deaf without speach and i start talking when i was 8yrs old and noticed just a little hear when i was 12....now i am 41 yrs old and i feel worse with memoy loss ,headache dizzy spell, when i know what to say i forgot within amins its like my mind black out and took me aweek to remerber it...also my health plms seem to getting worse. i think i need to go to doctor and talk about it because my hearing seem to getting worse and also my speech too..i alway though because of my drinking plms to blame and when i control my drinking plms and i feel something not right and something is missing with my life what i am having now..i like to say thank you and most of all to say thank you to my mum too. i will update you all......i am shock still now :(

Posted on 28 April 2012

Comment by Ann Driskill

I just found this site today, and for the first time EVER, I finally feel I've found some answers. I had meningitis as a baby and am legally deaf as a result. I suppose I was so focused on that fact that it never dawned on me that it might have other reprocussions as well. Yet here are all my symptoms. From short term memory loss to numbness in limbs, chest pains, headaches, to the fatigue which I went to many many doctors about, and wound up being termed Chronic Fatigue Syndrom. I feel like a huge weight has been lifted from my shoulders today. Thank you.

Posted on 27 April 2012

Comment by Ann

My name is Ann. I had H flu when I was 28 months (+/-) old. Now I am 37 and discovered that the past few years I have had auto-immune issues show up including endometriosis, eye infections (not contagious) that required steroids, allergic reactions that required steriods.

More recently I have experienced a rapid onset of vertigo (vertigo woke up with room spinning) followed a week later by severe headaches, lightheadedness that comes and goes, verigo that comes and goes, fullness in my ears, twitching/eye movement that comes and goes and even chest pain.

My lymphocytes are elevated and no cardiac problems detected.

I am a law student so research and wanting to know the facts comes naturally to me. I feel that based upon what I am reading here from other survivors of H flu, we share similar long term effects and complications. That need to be documented for future generations.

I am interested in working with other H flu survivors to learn complications you are experiencing as adults and to help journal these to help other survivors and generations to come.

Posted on 21 April 2012

Comment by Tammy Hazelwood

Hi.I contracted viral meningitis in 2005. We had just come back from vacation and on the way home I started having pain over my left eye,just thought it was a headache,came home and that night it had spread from my eye to my whole head and neck.It was though someone was twisting my neck and the pressure in my head and oh the pain was unbearable,I had to crawl to the bathroom because I couldn't stand up because of the pain.went to er and they did a lumbar puncture and I had viral and they gave me pain meds and sent me home! They told me 7 to 10 days and I would be back to normal....wrong! After lying in bed for three more days the pain was just increasing more and more so i went back to er and finally was admitted after ct scan showed that I had a lot of swelling in my brain and they started giving me some kind of medicine to reduce the swelling and they said if that didn't work the would have to put a shunt in my head.Well it worked but I was bed ridden for 4 months of my life because of all the after affects.When I would get up pressure would build up in my head and I would lose my hearing and start seeing double but when I layed back down it would go away,so I layed like that for awhile thinking I'm going crazy or I'm just going to die because the doctors said I was fine but I wasn't! Finally they sent me to a neurologist and he found out that when they done the lumbar puncture it caused me to have a slow leak of spinal fluid which will cause the pressure and loss of hearing when i stand up so they did a bloodpatch which is very painful,but helped tremendously.It's been 7 years and I suffer from severe headaches,stiff neck and still have pressure that rushes to my head if I move too quickly and dizzy spells.Every time I get a headache I panic thinking it will happen again.Depression is severe and I still have hearing problems if I lay on a certain side.My neck cracks and gets stiff everyday,I take a lot of advil which will probably destroy my liver but I can't handle the pain,what to do?I'm very moody and I have become withdrawn from society.I am 43 and I sleep all the time and my family suffers but I'm just always tired! I played softball and was very active until this happened to me and the doctors tell me that there shouldn't be any kind of after effects with viral but why am I like this now?I thought maybe I was just imagining all this and that I was crazy but after reading all the comments I feel so much better.I think they need to further study people who had this many years after they recover.

Posted on 20 April 2012

Comment by christy lynn aylward

Hi i'm christy! I was 12 months old when i was finally addmitted to the hospital. I was dianost with hemophillis influania bacterial meningitis. They first thought that it was the cold and flu. Then my mom took me to another doc. the next day after the first one the day before. They told her the same thing and this was 1979. Then finally after having a 104.3 temp they fianaly took me in. After all of that stuff happened they told her well we don't know how the out come will be later.

Well i never did good in school i have been depressed,stress disorder,panic attacks, have migrians even to this day. After ihad my scond child it got worst with the rest of my body.. I had my first hip replacement done at 31.. They say its firbo and i have otso arthritis but meds do not work i have tried a few.... well no one can fig anything out..I have been out of work for a while and the ssi people don't want to help people like are kind.. I do have more issure but there are too many and the list keep going. But lately I have had more things comeing out. I have been shacking the mem is going more hard core, i have quit all the meds to and i am going to try some thing else out ...lets just say head to toe.....everything and everywhere... I have lagitis now for 9 months on and off more on then off..Then reg doc says go see a throwt doc... I'm a little scared i don't no how much more one person can take it dose help to know each story has everything wrong like i do.... i have tooo many to list but it helps a little to know their are people like me.... thank you everyone for some of your stories.....

Posted on 20 April 2012

Comment by christy lynn aylward

Hi i'm christy! I was 12 months old when i was finally addmitted to the hospital. I was dianost with hemophillis influania bacterial meningitis. They first thought that it was the cold and flu. Then my mom took me to another doc. the next day after the first one the day before. They told her the same thing and this was 1979. Then finally after having a 104.3 temp they fianaly took me in. After all of that stuff happened they told her well we don't know how the out come will be later.

Well i never did good in school i have been depressed,stress disorder,panic attacks, have migrians even to this day. After ihad my scond child it got worst with the rest of my body.. I had my first hip replacement done at 31.. They say its firbo and i have otso arthritis but meds do not work i have tried a few.... well no one can fig anything out..I have been out of work for a while and the ssi people don't want to help people like are kind.. I do have more issure but there are too many and the list keep going. But lately I have had more things comeing out. I have been shacking the mem is going more hard core, i have quit all the meds to and i am going to try some thing else out ...lets just say head to toe.....everything and everywhere... I have lagitis now for 9 months on and off more on then off..Then reg doc says go see a throwt doc... I'm a little scared i don't no how much more one person can take it dose help to know each story has everything wrong like i do.... i have tooo many to list but it helps a little to know their are people like me.... thank you everyone for some of your stories.....

Posted on 19 April 2012

Comment by Evan Darby

I never have anyone to talk to about this because people dont understand what this is and the effect it has on you. I had bacterial menangitis when i was 15 years old, rewind 8 weeks prior to my sickness (i cheated death twice i guess you can say, i believe im blessed by a higher being) it was my moms birthday and i was riding around on my fourwheeler, not paying attention i pulled out into the street with out looking both ways and bam. I got hit by a pickup truck (chevy) going 60mph. The only thing that saved me was the angle the truck hit me from and the racks on the fourwheeler. A man riding a motor bike behind the man that hit me whom stayed untill i left, said i flew through the air and landed on my side, bounced in the air, then hit the ground again. I walked away from the acident with a busted knee and bleeding lip at 15 yrs old. 8 weeks later i got bacterial spinal meningitis. I just remember being real sick and staying in bed allday. I would only get up to vomit, i couldnt hold anything down and i had a fever of 104. I remember by brothers comming in my room and they were making noise and i just started to cry cause i felt so bad. i stayed in bed all day and around 10pm, my step mother came in my room to ask if i wanted to bathe or eat or drink something and i stumbled my way to the bathtub, when i pulled my shirt off i noticed i had red marks on my skin and showed my step mom (gail). The look on her face made me scared and when she left the bathroom i resnsed off and went back to bed. She came in my room at about 2am to check on me and i started to feel more dementia than anything else. She asked if i wanted to go to the hospital and i could tell she was nervous so i wanted to go, because i knew if she didnt know what was wrong, i sure didnt. I dont remember much of the ride to the hospital, it was quiet, and she kept asking me if was ok. We had to go to the after hours and they didnt know what the hell was wrong with me. So she took me to the emergency room and from there they gave me a spinal tap, Wich hurt like hell, i felt it in my legs and lower back. i remember asking the nurse if was going to die and she said "not while im here". I layed there untill the tests came back and i had to be air lifted to the childrens hospital in New Orleans Louisiana. I dont remember much of the ride, we landed by the superdome, i could see it from the stretcher then into an ambulance. Once i got there i went straight into ICU, were everything as far as memory goes just gets really odd . I never went into coma though. I remember just feeling like was in the room, but not there in my own conciousness i guess you could say, I was suffing from dementia big time, minor hollucinations, and i didnt even know who my own biological mother was when she arrived. I thought i was being kid napped and kept ripping the heart monitor sensors off my chest when the nurses left the room, i was completely out of it. I stayed in ICU for 3 days, then in the hospital for 2 1/2 weeks. I also had spesis which turned into blood blisters on my skin, all over my arms legs and feet. My feet turned purple and they hurt extremely bad, the worst blood blister was on my right elbow, i still have a huge scar from it, and also on my feet. The doctor wanted to amputate my left foot and my right arm from the elbow down. My dad pleaded for any alternative and the doctor said i might be able to rehab it but it will be hard. Rehab was in the hospital and it was VERY painful, my feet were trying to die and i was walking on them, that kind of thing is excrutiating. I survived yet another brush with death. Had my step mom not asked my if i wanted to go the hospital that night i would have died. I recently started looking into menangitis to further understand what i had, keep in mind in 22 years old right now so im just starting to undrstand whats wrong with me. Then i found this site. I was never able to go back to the doc for a follow up because Katrina hit louisiana soon after i recovered. I noticed my memory is starting to become more vauge, also i think over the past year i may have developed some kind of mental disorder. I mumble to myself alot, and will talk and when i look around im not talking to anyone. I have trouble sleeping, i get very depressed, i get spliting headaches that literally make me cringe and i also have chest pains at random times. I never went back to the doctor, mainly because me and my fam just dont have the money. I hope this doesnt keep getting worse though, if it does i dont know what to do. If anyone has any information or advice or can give me some since of direction to go with this please, email me at de937@ymail.com Thank you, and God bless all of you and those of you who have lost loved ones from this experience.

Posted on 14 April 2012

Comment by Nichole

I am 32, I developed HIb meningitis at 7 weeks old in 1980. My mother was told i had an ear infection and to go home. Thank fully she is a smart women and to me to the hospital the next day. I was there for a rough and scary month. I recovered and went home with nothing more then scars from IV lines. Or so we thought, i had trouble developing my motor skills and needed leg braces as a toddler. After my pre school years i grew and developed normally. @ 6 yrs i needed glasses, i was a very clumsy child, with lots of stitches but nothing broken. My first problems started at 17. I developed intense chest pains, test were done for (pleurisy, periendocarditis and pulmonary embolism) all were neg. I was told i had a panic attack disorder (bullshit) the pain continue and was aggravated by exercise. At 19 after 2 years of constant strep infections my tonsils were removed. Chest pain, migraines, sore knees, and sore legs /hips walking on lose sand and sitting for long time hurt,and plagued me all during my 20's. In 2003 my 3rd child only 4 wks old was hospitalized with meningitis symptoms but was found to have sepsis infection instead he also suffer chronic classic scarlet fever for years until tonsil were removed. In 2008( still gets strep) i suffered increasing knee soreness and balance issues.
2009 we moved south to GA, with-in 24 hrs of being in the heat i was struck down with chest pain again and my first aura migraine(loss of site in left eye10-20 mins). Since then my list of symptoms has exploded. I'll list them: debilitating sciatica of both legs, aura migraines, costal chest pain,knee pain, burning soles of feet, tingling of legs, numbness(neck, skull, inside of thighs, lower back, legs, big toe and diaphragm area) stiffening of my whole body, hiccups,rib pain on inhalation, weakness of legs, throbbing head.
I have had every blood test run including lyme the only thing blood work says is a high RF level (no lupus or RA) lumbar/pelvic x-rays and MRI are perfect, shoulder MRI is normal but shows age related wear. My body is perfect so say the Dr's.No medications help just mask or suppress pain. I am now out of work because of pain and decreased mobility. My new Neuro dr has ordered a nerve test and a brain MRI, he thinks it's MS, as does my CPT. When i asked him if my meningitis could have cause this he said no. I hesitate to believe him.

Posted on 13 April 2012

Comment by Larry Scott

I contacted bacterial spinal meningitis three years ago. But unlike what others here have mentioned, my pain was in my lower back and I did not have headaches. It happened on Super Bowl Sunday. I got real tired and left my buddies to take a nap, I woke up in the hospital because I guess I had woke up screaming in pain and they had called an ambulance. The emergency room diagnosis was that it's was a problem with my sciatica. I was given pain medication and sent home. Since I lived alone, one of my buddies had me come to his place. That night, around 4 AM, I was again brought to ER. This time a nurse on duty recognized my symptoms as being similiar to a patient that had been admitted two weeks prior.with meningitis. I was in a comma for several days and then in the hospital for about three weeks. When I came out I was fortunate to not have any long term symptoms other than some memory loss. Memories would return when someone or something triggered a remembrance. It's been three years since that episode and only till recently have I had symptoms that I am beginning to wonder may be a result of the meningitis. During those three years I have been active in the gym and a trainer at The local World Gym. I have led a pretty healthy life. About three months ago because of travel etc., I stopped working out as much, stopped my supplement schedule and started experiencing:symptoms that my doctor thought was a TIA. I complained about feeling some numbness in my arms and joint pain in my legs. Seeing that these symptoms are mentioned here by others, I am wondering if they could be related to the meningitis.

Posted on 11 April 2012

Comment by Shanda Mc

I am so sorry to hear of everyone's pain and suffering, especially to those with loss of a loved one. I never knew there was any one like me. I have suffered tremendously since I had meningitis in 1998. I am now in my late 30's and have been in disbelief at the amount of pain and health problems which have evolved since.
I have to see specialists, can barely walk, my life has been taken away I feel. I do not wish to take pain medications because they won't help. I am trying physical therapy. I work six days per week. I have just had my gallbladder removed only to find out that I really have lupus? I feel as though I am falling downhill and can't stop. My quality of life has greatly diminished. My worst fear is that my children would see me suffer. I go to work and work the day away only to come home barely able to stand. May you all be blessed and hopefully someone would find a way to study the long term after effects of this disease. To Wayne and your daughter, I am so sorry for your loss. I know you loved your wife, but there is so much that we do not know or expect after this disease. I know you would not want to see her suffer either. May you find happiness to all and be blessed.

Posted on 08 April 2012

Comment by Jana

I had Septecemia and Meningitis. I was unhooked from IV 2.5 hours after a LP was done in the ER after a CT of my head confirmed an infection. I was taken home 2.5 hours after a full vile of spinal fluid was removed from my spine. My real condition lied about on the charts. When I was returned back to a hospital shortly after the LP now drowsy I was denied medical help.
A cover up ensued. I am currently suffering with the damage I can hardly bare day to day. Those responsible have made sure that I cannot get any tests,care or treatment. So I cannot expose what went on. This is what I have to deal with . Concealment of damage to my body day after day.
If their is anyone willing to help please email me.

Posted on 05 April 2012

Comment by Audrey McGhee

I offer my sympathy to everyone who has suffered from this awful illness. It is interesting and helpful reading all your comments.
I had bacterial meningcoccal meningitis at the end of November 2011. It came on very suddenly at work.I felt fine in the morning but in the afternoon started with a slightly woozy feeling in my head so left the office for some air. Returned after 5 minutes or so feeling so cold and shivering. Thought it was flu so went home and straight to bed. Next day felt so bad with headache, sickness, aching limbs and aversion to light, husband called doctor who diagnosed gastric flu over the phone. I knew it wasn't that but had no idea what it was My husband popped to shop for more headache pills and returned to find I had fallen out of bed and was semi-conscious. He called the paramedics but I have no recollec tion from then until I was woken from an induced coma after 2 days. It was so frightening as I had no idea what had happened at that time and as I could not move or speak I assumed I had a stroke.The doctor then said I had meningitis. They had done a lumbar puncture and after another couple of days were able to say it was meningococcal strain b. From then on I made remarkable progress and moved to the main ward after 6 days and went home after 11, having had 10 days intravenous antibiotics.
From then on progress seemed slow with tiredness,headaches,tinitus and sleep problems.
I have just returned to work on reduced hours but am strugglng with fatigue. I have also had the problem someone else mentioned of forgetting what I am saying in the middle of a sentence. I also feel my memory is not quite as sharp as before and am clumsier. My balance is nowhere near as good as before and I do go red and have hot flushes occasionally (although this could be my age 55 I didn't have them before) I still have some trouble sleeping sometimes. My confidence has been affected slightly and I get upset and angry easier than before with mood swings.
It is good to know that I am not alone with these symptoms and support is there. Hopefully they will dissapear in time.
What does worry me slightly though is that the doctors gave me the impresson I would not get this again. Reading the comments I now realise that it is quite possible to get it again but at least I would recognise the symptoms if it did.
Good luck to everyone, especially those affected much worse than myself. I know how lucky I have been.

Posted on 31 March 2012

Comment by Olivia Jenkins

Hi I got viral meningitis as a 9 yr old and was given a spinal tap, I was 2 weeks in a isolated ward and had quite bad headaches often near to migraines as a young childthere is a history of depression on both sides of my family, I was diagnosed with manic depression in my twenties my relationships have suffered terribly throughout my life, it's nice to know I'm not alone,

Posted on 30 March 2012

Comment by Brenda Thomas

Hi! My name is Brenda and I am 49 years old. When I was 9 months old, I had spinal meningitis. Fortunately I survived and had no affects for years. When I was 20 years old, I started having seizures. When I was 35 years old, I was diagnosed with multiple sclerosis. I am wondering if there is a connection between the two. Any thoughts?

Posted on 26 March 2012

Comment by Matt Friesser

When I was 8 months old I was taken to the doctor, and my doctor told my dad to rush me to the hospital and there would be a room waiting for me. Upon entering the hospital I turned blue. I was seconds from death. (from what i've been told my whole life) I was diagnoses with spinal meningitis. Well obviously I survived, and not too much later, by miracle..there was no trace of it. All tests came back great! I've struggled with a form of dyslexia throughout school, and as early as I can remember I've suffered depression. At 17 I started having back spasms and horrible back pain. In 2007 back pains caused me to lose my job, and in 2010 my back issues caused me to lose feeling in my right leg and foot. 2011, at the age of 27 I had back surgery to fix my back.. and with MRI's they found a tear/hole in my spinal cord which the dr. said it could be from the spinal tap of meningitis... My spinal cord is 75% smaller than what it should be. So now i'm left to wonder if there was a medical malpractice when I was younger? Are my back problems related to spinal meningitis? I also have one leg that is a bit shorter than the other... Is my depression caused from spinal meningitis? I used to get a lot of headaches, but haven't in a long while...

Posted on 21 March 2012

Comment by Phyllis Grigg

Hello everyone, It has been amazing just reading all your comments. You all have great courage in beating or living with the after effects of meningitis. No doubt that its a killer, but with faith and determination you have to be mindful of your own health especially as you get older the body does start to deteriorate. But the thing is keep fit and healthy, keep nurturing the mind and body mentally, physically and spiritually. Yoga is great brings balance into your chi. Massage keeps the blood flowing and the aches and pains at bay. Flax seed oil caplets or cod liver oil are great to take.
I contracted meningitis when I was 11.. I am now 46yrs old. I have kept fit most of my life but it has been a struggle. This week I have just found out that I have diabetes type 2 and also an over active thyroid. Its strange that I have contracted these ailments as I have always eaten healthy. I have had rheumatoid arthritis since I was 12 years old funny that. A lot of muscular tension, along with spinal scoliosis which has accelerated over the last 3 years. I frequently get sore legs and the soles of my feet are in pain when I stand first thing in the morning. I get chest pains lungs and around the heart. As I am no doctor I put it down to the surrounding muscles of these areas. Yes the spinal tapping sux as I have had problems in the same area for years, nerve damage. Suffered depression in my earlier years but have now gotten on top of it with meditation, retrained my brain. Memory loss well I cant retain too much knowledge. Short and long term has had its error, speech is becoming worse like the muscles around my mouth go to sleep.
Yes I nearly died all my major organs started to break down, heart, liver, kidneys. One of my docs accused me of being an alcoholic at 33 because of my liver count. What I thought and my mother thought I had was a kidney infection back then until my doc at the time sent for my medical reports and apologized to me profusely saying that my doctor at 11years old had told a lie and in fact I had meningitis. I try to lead a normal life but as I get older I'm becoming more fatigued as well. Like the body is wearing down. My brain gets overloaded and when the day comes I get panicky with all the jobs I want to do that day. I lack focus.

Peeps learn to live with it find a way of coping with the damn thing. Learn to listen to your BODY and LIVE.

God bless and take care all of you.

Posted on 16 March 2012

Comment by roy fontenot

Hi. I had spinal meningitis at the young age of 18 mnths. I am now 33 years old. i have always had dizzy spells. But i never thought anything of it. I have had severe pain in both hips and knees for as long as I can remember. To where i have to sit for 10 minutes then stand for a few. I lose sleep because of the constant pain and agony. I always thought it was do to me being over weight. I am 5'10 and weigh 250. recently I went to the doctor and they told me that it sounded like osteoarthritis. When the xrays came back the doctor said I had nothing wrong. Almost like I was fibbing about my pain. I refuse to take pain pills because I dont like the out of it feeling that they give me. I have dealt with the pain for so long that i think I have built a very high tolerance for it. Things that would put most people down I can withstand. i hurt so bad that it scares me to just how severe the pain really is. Can someone relate to this.

Posted on 15 March 2012

Comment by Odette Walden

My daughter, 2004, was 18 months when contracted pneumocco meninigitus. She spent 10 days in a coma and a further 7 weeks in hospital. We were told she wouldnt live and if by a miracle she would survive she would be in a vegetive state.

Luckily my gorgeous girl survived . She is 9 years old in 3 weeks.

My daughter has lost 50 % hlearing in both ears. Has learning difficulties,memory loss ,speech problems.
Like many other suffers she starts to speak and then forgets her words. She is also becomes extremely frustrted and bad tempered.

She has already had to repeat a year at school and is finding it hardto keep up with her class room.

I am so concerned about her future ,people taking advantage of her ,not taking her seriously. She is already losing confidence and does not believe in herself. I jam blessed she is here and alive, and so so beautiful but i want to protect her as much as possible by giving her all the support she needs. i also do not want her to use this awful disease as an excuse not to believe in herself. Any advice will be appreciated as nobody seems to understand

Posted on 02 March 2012

Comment by Crystal Cisneros

Gary, you are not the only deaf person who can write this...but maybe not many can. I had meningitis at age 14. Completely lost my hearing. Sense of balance and memory problems every since also. I had a family history of bi-polarism so I didnt link my depression to meningitis until about 10 yrs ago (Im 47 now) and I didnt realize memory problems were linked to it also, until I read these stories. Thank you guys, for telling your stories!

I had depression and suicidal tendencies for 20 years after I lost my hearing. I still struggle a bit with depression and fatigue but nowhere near what it used to be. I do not take any drugs, except the occasional aspirin.

I flush red on my face and neck when under stress or embarrassment. I am so glad to be able to link that to something now- the meningitis.

I have never had a brain scan, but probably have lesions also.

I had a cochlear implant 20 years ago but it didnt help much (is not anywhere near what normal hearing was like).

I have a high IQ and a strength for languages, but life has been very difficult. I have not been able to keep a job due to depression, and have no career. I still work at whatever I can, but have done considerably less that I might have otherwise.

I had 5 children and have been married twice. Currently separated and heading for a divorce again.

Im finally doing well, since moving to the country and I am quite content with my life. But It was very gratifying to read how many people are dealing with long term symptoms due to meningitis like I am.

Gary, I would love to hear from you again about how life has developed for you.

email me @ crystally41@yahoo.com anyone who wants to talk. Thanks for reading- it is very cathartic to be able to express how meningitis has changed my life.

Posted on 01 March 2012

Comment by Bud Lawrence

I contracted bacterial meningitis Labor Day weekend 2003.Had missed the previous 2 days work with severe ear ache and general flu like symptoms.Went to ENT and prescribed a child's antibiotic (I was 38 at the time) and mild pain medicine.The next day i'm taken by ambulance to the hospital and go into a coma that morning.By the 3rd day I became septic and my sugar levels were basically imperceptible to life.Things we're not looking good.Miraculously,the next afternoon my fever started to break.2 days later I came out of the coma.Didn't know I was married-didn't know the 2 young boys wandering around were mine-didn't know much of anything.Over the next few days approx. 85% of my memory returned and nearly all of it came back over the next few months.Still have pockets of my memory that are cloudy and my recall isn't as quick or sharp as it used to be.Was out of work from Labor day until around December.Not sure what the long term effects of my bout with meningitis will be,i'll hope for the best.

Posted on 29 February 2012

Comment by dan daugherty

Hello all . i hear all of your pain.and am truly sorry.I to have cryiptolcockal meningtis.dotors said i would never walk or talk again but here i am i walked out here to set down and write you all.all i here from the doctors is we don't know anything about this.but people don't give up . just hang inthere and look on the web .hey i found you and i didn't know you were here .

Posted on 28 February 2012

Comment by brandonjake

my name is brandon i'm 17 years old, at the age of 4 my 1 and a half year old brother was diognosed with meningococcal meningitis he went into hospital and past away over night i was also diagnosed with it, i had several spinal taps and if it wasnt for my brother i would have lost my life, because i was so young when all this happened i cannot remember much of it. i'm doing major year 12 assignment on meningitis as i would like to lern more about it. if you would like to help me out my e-mail is brandon.merry@balakhs.sa.edu.au any information or personal experiences would be appreciated thanks for time.

Posted on 24 February 2012

Comment by Lisa

I have been hospitalized 5 times with viral meningitis. The last time was in 1991. I also deal with chronic shingles which my doctors believe is related somehow to the meningitis. I have memory issues that are very frustrating. I find myself feeling sad because I can't remember a lot of my past. I've wondered if the memory issue could be from the meningitis After reading other posts at least I know now that it probably is. Thank you.

Posted on 23 February 2012

Comment by CAROL SVRCEK

I am currently recovering from Bacterial Meningitis caused by streptococcal pneumonia at the age of 60. I was hospitalized on 11/30/11 at Brackenridge Hosp in Austin,TX. Thanks to the EMS drivers that had me Lifeflighted to the hospital. I was very active the week & days prior as it was Thanksgiving and am very active with church Altar Society, CDA, Fair member in addition to working part time. I came home from a meeting Tues nite but do not remember driving home & told my husband I was going to bed as did not feel good....thought it was sinus infection (as I suffer highly with sinus problems; although I am on sinus medication, weekly allergy shots & had just been to see my allergists a couple of weeks prior). I also had had sinus surgery in March 2011. The next morning my husband called me in sick to work. He brought me soup at noon but I was not hungry. He came back home at 4pm and was having a hard time trying to wake me. He called my sister, who also couldn't get me up. They called EMS, who lifeflighted me to Brackenridge Hosp. This was a Wed and my husband was told I likely would not survive the night and he requested a priest who gave me 'rights of the sick'. My fever had gone internally and reached 104.7 and was caused by a sinus infection and ear infection. A spinal tap revealed I had meningitis. I remembered nothing until the following Monday, Dec 6th. I had a brain abscess caused by the meningitis, was in ICU for 7 days & moved to regular room for 3 more days and then moved to Tx Neuro Rehab as I had difficulty walking, couldn't remember words or complete sentences. I remained on very strong antibiobics and released to home on Dec 16th. I continued with the antibiotics twice daily which I injected into my PICC line. It has been 2-1/2 months and the abscess is finally shrinking. I am now on oral antiobiotics and waiting for another MRI in a couple of weeks. I have difficulty getting motivated and want to sleep alot. I lost partial hearing from the high fever and now have hearing aides; and tubes in both ears. I have still not returned to work as my memory is not so good now (I had an excellent memory prior to illness), I am tired a lot. Meningitis is a terrible disease, but I am so fortunate for the excellent doctors I was blessed with and for my loving husband, and caring family and friends and our whole community who have prayed for me & continue to pray for my recovery.....all their prays helped me survive. I wish everyone who has suffered this illness my prays for your recovery.

Posted on 22 February 2012

Comment by Joellyn Tadio

A year ago, Feb 2011, I contacted strep meningitis. Age 57...I too had the worst flu like symptoms...I just didn't feel right, went to the ER, signed in and didn't remember anything....woke up 24 hrs later in ICU isolation room. Meningitis destroyed my mitral heart valve....after two weeks of antibiotic, I was air medivac to Queens medical center, there I had open heart surgery to replace my mitral valve. One of the doctors came to visit me, just to meet me and he told me I'm the second person he met in 20 years while working at the hospital. It's a rare incident.....Any how, it's a year later....my heart is fine, have to take medication for life...I'm having trouble with balance, concentration.....three months ago I was diagnose with chronic vertigo....my main concern is, I have to prevent falling or heading my head because of taking warfarin for my heart, which I will bleed to death....And here I am stuck with balance problems.....I'm lucky to be alive....I do the best I can and try not to be depressed....I feel everyone's pain and frustration.....May God bless you all....try to make yourself happy.......Aloha

Posted on 21 February 2012

Comment by Robyn Concannon

My beautiful first born son got bacterial meningitus at about ten months old. I hope he goes on this site one day and if he does I just want to say to him that I love him very much, as he has had a hard life and I am currently estranged from him. I love you. Please stay in touch.

Posted on 13 February 2012

Comment by Sarah

I got the viral version of spinal meningitis I don't remember which type at 16 yrs old now I'm 22
(They’re 3 different types of viral I later learned of)
During that time I had some minor brain swelling. I had tremendous pain in my skull that brought me to tears. (I should’ve been hospitalized but i went to a hospital that was NORTIOUS for having neglectful service with NUMEROUS wrongful death suits) Also at the hospital I was, They performed botched spinal tap to me 7 times! Any back pain that I have now is always in the exact same spot where the hospital performed the spinal tap 7 times hitting my nerves! I was lucky to walk away not paralyzed!
After effects lasted about 2-3 years with me
I lost some feeling in my fight foot.(botched spinal tap) Even though i could walk, i had no sensation. I dealt with unbearable pressure sensation in my head like someone was placing their hands on my skull and squeezing as hard as they could. Certain limbs would have tremors or shakes (legs, arm, head)
My memory suffered tremendously. I couldn't remember my mother’s actual name or my dad's actual names are Jim & Jenny.
When I was healthy enough to go to the store, I couldn't remember which vehicle i took when i came out of the store.
Now 22yrs old I overcome all of the affects expect my memory and my back pain from the botched spinal tap that was used to check for meningitis.
I hope my story helps other looking for some answers.

Posted on 12 February 2012

Comment by Sue Coles-Nash

Hi I am Sue and had bacterial meningitis at age 4.I was in a coma some time and in hospital for several weeks.My main after effect at first was joint pain......especially in my legs.That went on constantly until I was twenty something.Since then I have noticed other things like back and neck pain.I also have had increased anxiety with interactions with other people.I purposely chose an active job to keep my body working.I would recommend that to all people that have suffered with this disease,although the doctors told my parents I would never be able to I know it keeps me going.I also have memory problems at times......whether that is related or not I don't know.The anxiety and joint pain and headaches are for sure though.We all have to be strong though and take each day as a blessing.I never tell people that I have weaknesses and that I had this illness.They just accept me as I am,because that is me now.None of the doctors that I have ever seen relate anything that I have wrong with me to having had meningitis.But I am sure they realise and know that they cannot help me.Some give painkillers................I found one thing that helped with the joint problems .....or I should say a friend did.It is called Immune Egg.It is a powder that you take with milk every day and it makes me not hurt.I find it expensive so don't......cannot always use it...........but it worked for me.You can Google it and get info.By the way I don't sell this stuff.............just use it when the pain is too bad.So everyone keep their heads up and go forward!

Posted on 11 February 2012

Comment by Mason Albert

I am writing on behalf of my husband Mason Albert who suffered bacterial meningitis in May 2001. |My husband has been left paralysed and suffered this terrible fate at the age of 39 years old. He lost his speech his independence and his mobility. He has just celebrated his 50th birthday and is still bringing a smile to myself and the children. Everyday we thank God he is still with us, but cry that he suffers in silence.

Posted on 08 February 2012

Comment by little one

I had meningitus when i was 7 months old.... i am now 12 yeras old i have bed wetting problems ,cross eyed and have hearing problems ,i do wonder sometimes if it will get worse or if it will affect me when im older but i dont actually know if these problems link to meningitus but i have been reading your comments and some of you seem to be having the same problems ......

Posted on 05 February 2012

Comment by Melody Ferguson

My heart goes out to all of the survivors of what i call "the monster". I am 30 and had meningcoccol meningitis at 6 months while my parents were stationed in Manheim Germany (US ARMY). My mother told me that she went to change my diaper in the middle of the night and I had purple blotches on my legs. She took me to the hospital and the english speaking docter said I must have been having an allergic reaction. He then prescribed me benadryl for the blotches and tylenol for the fever and told her to take me home. Thank God she stayed waiting until the morning. Another doctor saw me and there was a lot of commotion. The blood clots bubbled and bursted leaving a lot of open scars. I received sulfer treatments and was in the hospital for a little over a month. During that time I would have treatments in betadine. I have pictures of this, and times when I would be in physical therapy. I healed and carried on with life, just with scars on 70% of my legs and a few on my left arm. I did fine in school. Just talkative :o)

There were complications when I was 8. I went on a field trip to the beach and was having pains during the walk home. It took me over an hour to walk 2 small blocks. When my mother took me to the doctor, they thought I had blounse disease. After seeing a specialist, they told me that my right leg had stopped growing. The growth plate had completely closed in my knee. While doctors were trying to figure out the best treatment, I had a growth spurt. I had one surgery in attempt to open the growth plate. They cleared the bone and added a piece of fat from my other leg in the cleared space. Then with staples in my bone as a marker to look/hope for growth, my bones healed and closed the open space before my cast was removed. I then had another surgery which was an ilizarov skelatal fixator. My leg was broken in three places, I had 7 pins and 4 wires going thru my leg. I used a size 10 crescent wrench to rotate the screws which separated the bone for lengthening. We accomplished almost 2 inches.

After removal (another surgery) I experienced atrophy and had 3 additional surgeries to help me bend my knee. My leg was in a straight position while I had the fixator on. After 5 years of physical therapy three times a week and a total of 6 surgeries, doctors advised of another growth spurt. I was 13 and tired! I begged my parents for me to quit. Either I get another fixator with the chance of complications or I stop the growth in my left leg. Working thru the atrophy and painful therapy sessions I managed to get my leg to bend to 90 degrees. There was a lot of pain during this process and I was prescribed some heavy duty drugs! Its funny now that I think about how much I was able to endure at that critical pre-teen time in my life. I then had the surgery to stop the growth in my left knee and I now stand at 5'5.

The long term complications that I have experienced physically would be a slight limp if I'm not conciously paying attention. No other physical issues. I did have a bout of pancreatitis at 25, but the doctors told me it was a result of heavy drinking. I accepted it and passed it to my parents as such, but I think the meningitis had something to do with it ( I still sip on occassion). My memory has been alright considering it was hard to comprehend while studying in school. I didnt pursue more than a few classes in community college. As a coping mechanism I smoked a lot of marijuana..a whole lot! I started puffing after I stopped filling my pain killer prescriptions. I managed with things that I was interested in, but math is a joke and I stopped school once I got to quadriatic equations (smile)

I am truly blessed to still be here without any amputations and just scars from meningitis and surgeries. I cleaned up and stopped smoking weed. I strongly suggest esoteric therapy! I have a wonderful job as a site manager for a non-profit that helps abused and neglected children in south Los Angeles. I am also a songwriter/singer in my spare time. The hardest part of dealing with the after affects now would be some bouts of depression, and a short attention span. I joke and say borderline ADD. It is very difficult to explain the scarring during when someone sees the scars. There arent many people that understand what "the monster" is. Its also a pain in the a** when trying to be open for a relationship. But my faith in God is very strong and I am grateful for the experiences that are an after affect of the disease.

This was very cool and comforting to be able to read all of your stories and to share mine. I cant re-iterate how important esoteric therapy is with healing and being able to "cope". I lucky to have a number of close friends and I am very close with my parents. Know that your support system is critical for survival!!! Peace and Blessings everyone!

Posted on 03 February 2012

Comment by Truth

Hello,
I am 31 yrs old male from India. Survived Meningitis when I was 8 months old back in 1981. My parents tell me that back then my condition was unstable for few days. Was in Hospital for many months.

Luckly I don't have any long term effects of Meningitis.

Posted on 03 February 2012

Comment by Mrs Susan Lee

I feel for all these people. I'am 52 years old and was stuck down with Bacterial Meningitis in 2008. I was within an hour of my life, my neighbour happend to be on holiday with his wife, to sort out their garden and could hear me being sick, and screaming with a horrible horrible headache and rang for an ambulance. Paramedics arrived and saw a rash on my trunk and legs, did a glass roll test then made me walk down stairs and down a long path to the ambulance..I was bent over, the pain in my head, and couldn't turn my head left or right, I knew i was dying. I got into the ambulance and pleaded for them to give me something for my headache..they put the oxygen mask over my face which made me vomit, but nothing came up. The journey seemed to take for ever, eventually arrived into A&E heart checks was done, and i asked the nurse for something for my terrible headache she said "I think we have already had this conversation". meaning you will have to wait for the doctor.. I don't remember anything until the saturday morning. I went in on Thursday at 9.20 a.m...and in that time did a spinal tapp, i kind of remember it. I can remember shouting but not shouting as it hurt to even breath, please help me, give me some pain releif, but the lovely nurse called Ruth who was on duty reassured me she could only give pain killers every 4 hours, I didn't realise i was already been pumped with antibiotics. I will always remember my consultant coming to visit me on the 2nd day and talking into my ear gently..I know how you feel, you will start to feel better soon and really held my hand. On the 3rd day I felt as if someone put a thumb on my forehead..from that moment on, I knew i was going to be better. Thank you Jesus. <3

Posted on 27 January 2012

Comment by Teresa

My name is Teresa. I am 49 years old. I was diagnosed with spinal meningitis when I was 4 years old. My symptoms were typical..headache, neck ache and extremely high fever.
My mother got me to the hospital at the brink of death. I was quarantined and in the hospital for 9 months. I do have partial memories of the actual symptoms, drive and the hospital stay. In fact I remember my nurse, Vicki so well.
I had tubes in my ankles and the scars to prove it since most of my veins had collapsed form all of the different IV's.
I know that I am very lucky. I have absolutely no disabilities or disorders because of the spinal meningitis. My memories are mostly pleasant... Even being in the hospital as a
4 year old. I am sure my parents had nightmares but I didn't and don't.
I am so sorry for everyone's loss and/or disorders. I will pray for all of you.
I just felt I needed to tell "my story."

Posted on 26 January 2012

Comment by Mary P.

The “after effect” I have is severe, constant, all-over joint pain. I came down with meningococcal meningitis at age 25. The first day I thought it was a bad flu. I had a high fever 105 F, sore throat & generally felt awful. I made an appointment to see my doctor, but they didn’t have a spot until the next day. When I woke the next morning, I could not move my legs. I was rushed to the Emergency Room. The one thing I remember from that morning was the look on the nurses’ face when they discovered the ‘spots’. I spent the next 2 weeks in the hospital. When I left the hospital, all my joints were huge and swollen.
I guess I’m pretty lucky, but the doctor’s only answer is to give me pain killers. I’m now 33 & a mom. I really would like to find another solution to my joint pain other than drugs. I have been to all kinds of doctors - rheumatologists, neurologists, naturopaths, and acupuncturists. Every doctor seems to have no idea of how to help. Now I am a patient at our local hospitals pain clinic, as I have no other options. I worry about the long-term effects of being on narcotics. I’m only in my 30’s – what’s going to happen to my health if I have no alternative but narcotics for another 50 years??
If anyone out there has a doctor that knows an alternative treatment, please contact me. You can email me at marypies@hotmail.com. I live in the US – West Coast.

Posted on 25 January 2012

Comment by R Johnson

I am 54 yrs old. I was told that I had meningitis when I was about 2-1/2 yrs old. That would have been in 1960 while we lived in Del Rio, TX because my dad was in the Air Force. Apparently I had to be in isolation for a short period of time. I don't really have any memories except that for some reason I recall my parents getting me out of bed and into the bathroom to throw up and that I didn't like being in a "crib" at the hospital because I was "too old" to be in a crib. I never knew until the 1980's that I could possibly have side effects from having been ill when I was younger. I also had the measles and mumps at the same time when I was about 3 yrs old. I seem to be the one child of the 4 of us kids that was always getting sick. I had walking pneumonia twice, had my tonsils out when I was almost 17, etc. My parents passed away years ago, so I can't ask them any questions today. Reading some of the posts on this page makes me wonder if some of my emotions and challenges throughout the years and now have any connection to these childhood illnesses. There are certain sounds/pitches that I do not like to hear or have near my ears, yet I also have trouble hearing people who are talking to me when in a noisy room, trouble remembering things, and even more I feel like it takes me longer/harder to learn stuff. Most of the time I just chalk it up to "me being me". But maybe there's a reason why it's always been a struggle. Maybe I'm just looking for an excuse. Guess I'll never know for sure. Who knows what the doctors at the base hospital knew about meningitis in 1960. I will count my blessings that I have a wonderful husband for 26+ years and 2 wonderful sons ages 22 and 17. It also makes me wonder what my husband and sons will have to go through if I reach ages 70-80 and have these symptoms worsen or more symptoms added.

Posted on 07 January 2012

Comment by Kylie

Hi my names Kylie, 19 year old I had bacterial or pneumococcal meningitis when I was 4 and almost died, my mum said I was touched by an angel and was lucky I survived it. I know have pains in my joints and when I run I tend to twist my ankles, I also have bad memory and can't remember my child hood at all, it also effected my growth; I'm short :( 4.5 feet, I also get stomach migraines, do you think it's cause I had meningitis ?

Posted on 06 January 2012

Comment by caroline casey

Hi - My son was diagnosed wiht H Flu Bacterial Meningitis 1 yr ago at age 4. He was hospitalized for 3 wks and then sent to a rehab facility to regain his ability to walk, balance and regain strength. His side affect was severe hearing loss in one ear and mild loss in the other. His balance is still challenging for him.

I am wondering what long term affects are in children. COuld sensory deficit disorder be an after affect? could behavioral issues be something stemming from meningitis? it is hard to tell what is normal rambunctious boy behavior and what is a problem. if it is a developmental problem i wonder if it can be related to the meningitis?

Posted on 02 January 2012

Comment by Jessel Evans

Hi, my name is Jessel. I'm from Trinidad. I'm 31 years old and survived bacterial meningitis when i was 15. Thankfully, my doctor picked it up just in time to start treating me for it. Because of an active lifestyle at the time, my body was able to fight it off quickly and I was out of hospital in in 2 weeks. However, while at hospital I was unconscious for 2 days, lost my balance completely and lost hearing in both ears. Miraculously (as the doctor says) I got my hearing back in my right ear only. My balance it seems will never be back to normal but I've learned to live with it. I was able to resume soccer at a competitive level and spend 4 years on soccer scholarship in Alabama. Like some of the earlier comments I've read, I too suffer with frequent headaches, back pains and knee problems. I work with a physiotherapist who has helped strengthen my quadraceps and ease the knee troubles a bit. Often massages and work with a physio can help with knee and back pains. I'm yet to go see a doctor about the headaches, but they've become more frequent as I get older. Wishing you all the best and good health! My advice: Stay fit, stay positive, don't give up and seek professional help with every symptom. As I said, I may never be 100 % again, with half my hearing and loss of balance but I'm able to enjoy life with my limitations.

Posted on 27 December 2011

Comment by evelyn picard

my mother, evelyn is my mother who till this day suffers frm the aftr effects of bacterial meningitus. or spinal meninjitus as shecalls it. her memory of her life isnot told all tht clear. and she doesnt no her family because of going thru adoption. she sed she got it frm an ear infection tht wasnt treated...well idk if thts so, but i gess ill go w wat she tells me.

my life, seeing my mother i new smthng was somewat strange.... and my father was very abusive towrds me, he was a child raper. my mom did not relize or even notice the obviouse signs of smthg being wrong, because shes not relly connected to reality

and taking care of me as me being her daughter, i was fed, bt the clothes she put on me wer not all tt matching so i lookd very much tacky.. and she didnt relly controll me or govern me as a normal mother wuld. and w me i had a temper, an so did she..insted of calming down and correcting me shed scream an yell rite bak.

i was also born w ABS an sometimes i wander ....w all her physical health problems ther culd be a link to y i came out this way

well anyways...as a child i was embarassed of my mother, it is evident tht she suffers frm severe brain damage, w the way she talk and her lak of sense wen ur tryng to explain smthng to her. she also wuld lik at my face and id feel humiliated as a child... this small neighborhood evryone knows my mother as pocahantas, or the naked lady...she will only wear bakinis

im not hating her at all i just didnt understand while growing up..... why i was the only child free to roam the streets...and y i lernd thngs the hard way. i jad to lern very much on my own experience

so me seeing her as my mother i c now tht im old enuf the tru state of my mother

i was taken away frm her at 12 because
i told my mom about my dad doing tht stuff and yes he went to prison for 50 yr .. but afterwrds my bro had ths frend who relly bullied him, and he was much oldr thn him and this guy was sp cruel to me and my bro.. an i beggd my mom to make him stop the terrible thngs but she didnt... and my mom being crazy she attak me and id get severy ill in my mind... we wer taken away frm her because she wasnt mentally able to handle carng for children.

everyone can see wen they meet my mother tht she is not all the way there. shes relly into her indian culture an she wears feathers frm birds n her hair...and she doesnt relly like clothes. and the way she moves and talks she has slow motor skills... frm spinal menenjitus

and rite now tht im old enuf to move bak home, shes been nearly beat to death about maybe three yrs ago... an now she seems more damaged. sphe seems to b getting worse.... sometines she wakes up.and loses the use of some parts of her body..she falls more and she is so so negative and stubborn an she wont let anyone help her

shes on SSdisabality chek and she is being used., by this lady ,her bf and her kids... they live her for free they use her... its like they brainwashed her into thnkng a certain way... she spend her last dime on them

and she doesnt take care of her self... its so horrible it seems w her condition and shes getting worse it seems..well id thnk she has alot of time left

her mind is so gone frm being so damaged it is too much to describe the things i hav to tell

and her physical state is seadily gettng more worse... i didnt see one person w a story parallel to mine..

it is a mess.... i hate spinal meninjitus.... i wish i culd find away to help her...

i hav so many stories to describe about her as a person....
johnson_rose51@yahoo.com

Posted on 19 December 2011

Comment by Shaunte

My name is Shaunte, and my story is very similar to Catrina Kimber's and Jeremy Ramirez's. I was diagnosed with Bacterial Spinal Meningitis when I was 3 months old. I was also very lethargic when I was taken to the hospital and had a fever of 104. My brain swelled and the doctors said that if I lived, I would either be in a vegetative state or severally mentally handicapped. Thankfully, I was neither. I had no learning disabilities growing up, except for some reading comprehension difficulties. Now I love to read. I was (and still am) so thankful that God spared my life that I decided I wanted to be a special education teacher. I've been in college for 4 years now, and am supposed to graduate in December of 2012. However, for the past year, I've been having a lot of cognitive problems, including reading comprehension difficulties. My short term memory is almost non-existent, and I have forgotten details from a few major events in my life. But most troublesome for me is my difficulty speaking. Most people are not aware of my problem, but it is slowly becoming more obvious. I have difficulty with word finding. I use the wrong word quite frequently, replacing it with a word that sounds similar, but is quite different. For example, yesterday I said "sickens" instead of "seconds." I also combine words together. I am so distressed about this because I'm already nervous enough about being a teacher soon, without worrying about making a fool of myself. I've seen a neurologist, and he did an MRI,which was normal. All he said was that there was evidence of brain shrinkage, but he said almost everyone has that. He then told me that he thought if I just believed I was healthy, that I would be. If only it were that simple. I asked him if my problems could be attributed to the bacterial meningitis I had as a baby, and he said no. I believe him to be wrong. I originally thought I had MS because I have almost all the symptoms of it, but after reading what everyone has written, I think spinal meningitis is to blame. I even tried contacting the hospital that I was in when I was sick, and would you believe they destroyed my medical records? They weren't even put on microfilm! They're gone. Anyway, I'm so glad that I found this message board because I don't feel so alone anymore. There are others like me. I heard about a drug yesterday on TV called Procera AVH (https://www.proceraavh.com/). It's supposedly a cognitive enhancer. Has anyone else heard about this drug, or maybe even tried it? Also, here's some advice: I've noticed that when I go to see my doctor, I often forget many of my symptoms, and therefore, cannot discuss them. I've found it helpful to keep a journal. As I go through my day, I write down everything that I do or say that bothers me. This doesn't have to be an essay. I'm sure you all lead busy lives like I do. Just write down little things that you know you will forget if you don't. When I go to see my doctor, I show him my journal in hopes that he will see something new and be able to help me. I would love to hear from anyone who's story is similar to mine. Please email me at shaunte5181@yahoo.com. God bless you all.

Posted on 14 December 2011

Comment by debbie

became ill 30th july 2011 while on holiday with irregular heartbeat which iv always had but never bothers me unless am ill so i knew i was in for something,i managed to last the 7 days holiday mostly spent in bed and when i got home went to a and e where blood tests showed a viral infection which i was told was prob labyrinthitis as id earache i was told it will pass take pain killers 2 weeks later i was still in bed with the worst headache iv ever felt it was horrific then the vertigo started then the vomiting and eye nystagmus blurred vision stiff neck and the pain was unbearable,after several visist to a and e and doctors who did nothing i collapsed and was taken to hospital had a cat scan and was told no tumour and sent home no more tests or explanation.what this illness can do to your head is awfull the nightmares were horriable and i felt like i was living in my own little bubble that didnt feel familiar to me anymore i was terrified and in tears daily not knowing what was wrong.i was told id have to wait 18 weeks to see a neurologist so paid to go private after 5 months living with torture everyday i needed to find out what was wrong as my doctor said i was suffering depression which made me worse as i knew they didnt believe me,its very lonely out there by yourself with no support,my mri scan showed swelling and fluid in my brain and i was told id had meningitis it took me 5 months and ended up having to pay to find out what the doctors should have found out long ago if they had bothered to do the tests on me.am angry and have lost total trust in the medical profession iv been left with hearing loss,balance and dizziness problems and a constant headache and vision problems,i have no confidence anymore and dont go out as the panic it brings on is so upsetting.i dont know if the after effects will get better or not and dont know where to turn as my gp practise are very unsupportive,its changed my life and my kids lives and the destruction and trauma this condition leaves behind is so very cruel.

Posted on 13 December 2011

Comment by Darren Blake

when i was 18 i came down with west nile virus that eventually turned into viral meningitis.its hard to believe that your life can be turned around by a tiny insect noone ever thinks anything about. i made a good recovery, 5 days in the hospital getting drugs pumped into me i came out like a champ. started exercising again and had no problems whate so ever. I wish that was the end of it but in 2009 i started getting that oh so familiar feeling again. i was 23 at this time married with a son. I told my wife we needed to go to the hospital and away we went. 7 days later i was out with yet again surviving meningitis, i am lucky to still be here. there is a woman i know who got it around the same time as me, both times. this time i wasnt so lucky on recovery. i constantly have migraines and the strangest dreams. my dreams are so vivid that its getting hard to determine reality from them. i was just curious if anyone else suffering from this feels like they are going crazy. i only know the 1 woman who is going through what i have and was just wanting to see if anyone had anything similar going on with them.
thank you

Posted on 10 December 2011

Comment by shelley vavra

Hi. I know that what I am about to tell all is not reconizable to the regular doctor.My people parish for lack of knowledge.I came down with menninggitis Aug. 27-2010. Never foget it.It hit so fast that I knew this was not a flu or cold. I am here in Arizona.The day was 109 degrees.I am also on the move.Up at the crack of dawn.9 months straight prior I was having nite sweats from the menopause.So my sleep was always broken up into a few hrs.Not on hormones and rely on herbs and homeopathic remedies.No Healthinsurance either.Which now I am greatful for not having.Years ago I had a homeopathic doctor that taught me so much about herbs and homeopathics that, that was my insurance.Self taught.Any ways heres my story.I had not left the property in 2 wks.My hubby was doing the shopping always on top of wiping the carts ,washing hands after coming home.That day I came in from mowing lawn.I felt great.Took a shower and had meatloaf in the oven to eat when I got out.My hair was down to my butt very long for years.Was combing it out and suddenly I had a queerness that came over me like nothing I had ever felt in this lifetime.It stopped me dead in my tracks.I told my hubby I don't feel rite.I am going to laydown.He never hears that.15minutes later My teeth were chattering,I was freezing THAN it was like someone sticking a hose at the back of my skull and filling my head up.The pain in my head was so esruchiating I had my hands on my skull to hold it all together.In 1 hr I had a fever of 103. Two hrs later 105.Just laying on the bed and my head on the pillow felt like concrete crushing all of me.This all started @ 5pm by 9pm that nite I knew what I had just from all the knowledge I had received from my homeopathic doctor in th past.I had my hubby look up menningitis on the computer.He got scared.Having herbal supplements,homeopathic remedies on hand and knowledge under me.I began treating myself for this long ride of pain and agony.Knowing antibiotics don't do a thing but play more havok in the long run.Could not eat or even drink water.But forced myself to take one drink to take a MILKTHISTLE this is for the liver for toxins.Cranberry extract for the kidneys to filter toxins out.10,000 mg vit.C.Goldenseal root,Paud arco,Cats claw,Elderberry.These are all for viral or bacterial infections.The liver and kidneys now are working overtime thats where milkthistle and cranberry come in to support critical organs for taking this on.I mean mega doses of these 2.If you cant even drink water like I could'nt the next day I crammed it under my tongue and let it go slowly.By 2AM that nite it had gone into my spine.Fever at 106. I already have scoliosis.So Even if I had health insurance.A spinal tap would have been detrimental.The outcome is unknown of leaving paraylisis in certain areas of the body and the hospitols cover themselves by having you sign a waiver.And thats more stress on the body which it didn't need rite now.Your adrenals are going into flight for you life.So I needed to pump them up and give them more to deal with this.This is where Astragalus root comes into play also,this herb targets adrenal functions.Co enzyme Q 10 for the heart 100mg 4 x day.Meanwhile I am peeing like crazy so I am getting dehydrated fast and cannot eat NOTHING! Weighing in at 135lb/5'7'.Now the pain is in my bones its moving fast threw me And I knew it.By the second evening my head and bones hurt so bad even the bones in the bottom of my feet.It was as if I was being crusified.It was difficult to walk to the bathroom.I was walking like I was 100yrs old and I was only 48 skinny active lady & healthy before this.I Prayed to Jesus to take this or give me knowledge and wisdom to come through this.When I did sleep it was from pain exhaustion, maybe 20-30 min intervals.The fever still at 105 to 106 fluxtuation.I knew my brain was boiling.My head felt like someone crushing it to concrete and the third day out of desparation I took my wolfs shears and brought all my long hair I have had all my life to the top of my head and CUT IT all.Hoping the weight of it would releive some pain on my brain.Knowing Being in bed to long can cause fluid build up in the lungs.I forced myself to get up and stand up against the wall for 3 min or so, so exhausted trying not to cry because it made the pain worse.My hubby wanted to go to the hospitol.But no health insurance,worried about them taking our house.I stood my painful ground.No I will die here and not there I told him.I would proble get sicker there and catch god knows what else with my system being down.Than explaining to him,my scoliosis and the spinal tap bit.Later this third day in the evening laying there in bed looking around,all the vivid bright colored art on the walls went to looking pastel colored to hrs. later to black and white.At the same time my hearing fading in and out.I let him know what was happening.All the time had to keep my head to guide him on what to give me from herbs to homeopathic.The homeopathic remedies I took are RUTA GRAVELONS,RUS TOX-BELLIS these are for arthritis but you see its lack of fluid in the joint that cause arthitis.I am dehydrated so these work on the joints and play havov with the menningitis.You may not feel it work because of the fever and delirium but it is working.DMAE-GINKO for the brain.Gives oxygen passes through the blood bain barrier and keeps neurologicals clicking correctly instead of short circuiting from the fever and mengines being filled with fluid.This being the 3rd day going into evening losing eyesight color and hearing and taking frequent pain pass out phases.That nite when I was asleep I remember in my sleep not awake mind you.There was a coldness of cold I felt "internally" That I could never describe or imagine in being wake.As I sleep I had a knowledge inside That I was dieing.I woke suddenly from that thought in my sleep.Looked around as if someone said something to me than Oh God Here came the pain like no other time before I cried out PLEASE GOD MY LORD JESUS Take me I am ready or take this Cause I cannot do this. The pain was unreal to me And I could not beleive this agony of torture.Than a calmeness came over me but the excrusiating pain was still there.Than this thought crossed my mine that, is this was jesus felt when he was being crusified.It was a moment at 3:30AM that this happened to me.It was as if I was feeling what he had felt in that time.But the calmness and peace was so santifed it at that moment outweighed the pain even though I could feel it.I Cried right than and it didnt hurtfor the first time.I knew without knowing how I knew that he was here and had me in the palm of his hand.Lord Jesus knew his pig headed little girl was not budging to the hospitol and was going to go home from this one to his.I endured this 2 weeks with a fever of 105-106.It started to drop 1/2 to one degree every day on the 13th day. My normal body temp of 98.5 degree came finally and stabilized at 3 weeks exactly. with my vision full intact and a weight loss of 25lbs and walking like a feeble 100 yr old women.I quareenteed myself for one more week than started going to my chiropractor 3 x wk. He took me in out of the kindness of his heart after he saw what I looked like and told him what happened.He has never charged me one dime.He knows I don't have health insurance. I waited 3 months to have a through eye exam cause I wear glasss but my eyes are'nt that bad.But wanted to know If I had scar tissue from this since I lost my vision and hearing intermitantly.My eyedoctors daughter had it and had eye scar tissue and eye problems after.When I described to her what I felt and went through she said ya thats exactly what my daughter felt and had gone through.My eyes were PERFECT.She wanted to know what I did to get through this.I told her what I have stated here.Though extremely fatigued afterwards.I had enough energy to take a shower but not come my short hair out and I would have to take a nap.I also took HIGH B COMPLEX by garden of life vitamin code and 5000 mcg. of b-12 in methylcobelim form or RAW B12 from garden of life These are for all neuron transmitters in the central nevous system with is need in high quanities during this BUG.It protects the nerves even though its runnnig through the nervous system and you feel the pain and 2 tablespoons of extra virgin coconut oil which in turn stableizes blood sugar levels when you cannot eat or drink water.I would just let it sit in my mouth cause I feared anything I swallowed I would throw up,Its very good and becomes like a liquid water at 72 degrees and hardens at 71 and below.I took ALL THIS also when I came down with this. I had no water or food for 2wks. I remember my first meal I wanted a head of lettuce and some necterines.It took me 3 days to eat that whole head of lettuce and one necterine took me 1 1/2 day with drinking small amounts or I should say sips of distilled water.TO completely get back to my energic self took 8 months and it was slow coming and during that time period off and on I would get depressed AM I ever going to be right again?I would ask myself.But I stayed VIGELANT!! on VITAMINS COCONUT OIL SLEPT when ever I needed. LET everthing in the house go to crap and even lost my credit and was served papers for my credit cards.But you know what That didnt affect me.When you almost die and You live through it and theres a guy serving you I looked at him and just smiled and told him what happened to me and this is NOTHING just paper.Well mam this will affect you you know.This again I told him is a pc of cake to what I have just been through.I guess he expected me to panic.But there was nothing I could do about getting menningitis and rode it out on gods herbs he put here and the knowledge he granted to me threw his grace.Because I had no Health Insurance And he'll have to do the same on my credit issues now.When Aug. 27 of 2011 came around,3 days before I hunkerd down afraid it mite be coming back and remenissed on what I had gone through last yr.Than had a revelation. That since I came down with menninggitis I have never had nite sweats since than.WHU HU!! I also Have all my energy and mental stamina back.Actually I feel better now than I did before I came down with this.But beleive me when I tell you this I had to force all this stuff in me to keep myself alive and it was hard.But these things are critical for a recovery and I never eat out or do fast food or a pit stop for any processed food.Mood snappiness getting angered easily mine is probly menopause. But I got angered I guess and moody because I was angry at my body for getting it and for letting me down than not getting better quickly.Please I tell you all. ALL the herbs and vits and homeopathics I took and some I still take today will get you bette and feeling normal again.But did you know that PHARMACYTICALS in GREEK mean to do harm and poisen. I did not spend hrs rejoicing typing all this when I can barely type a regular pace to not have this in some way HELP SOME ONE out there.I am a living testomonial that it works and was taught by the best in homepathics and natural doctor.When he gave me knowledge and took time out for me to know how. All he asked of me was if ever there was a time to help others on what I have taught you. Show them also in need of help.If you have some questions on pulling out of this and feeling better I may be able to direct you in the rite direction on what you can do. You may contact me at: zutechi@yahoo.com

Posted on 06 December 2011

Comment by SERENA WILTSHIRE

Hi, I am 24 yrs old i contracted mennigitis of my 3 days after my 24th birthday its was absolutly horrible i had all the sypmtoms even the horrible rash. i believe i recovered fast cause we caught it at the 3rd day i was in the hospital for 2 wks and got discharged on meds i still have head aches now and then but i found that for no reason i am extremely depress and just most the time feel down i also have issues with balance and a bit of dizzyness still if i move to fast but the thing that has me most worried is my depression... can anymore help or give me advise please feel free to email me ruffcuttsbarbados@gmail.com thank you

Posted on 30 November 2011

Comment by Lisa O'Brien

My son was diagnosed with menengitis at 23 months. We took him straight to the hospital as it was a sunday morning and they reckon that is what saved his life as by the time we got there his body was covered with the rash and he was going into convutions... after being discharged from hospital a week later we thought, we are so lucky no loss of limbs, no brain damage etc and home we went. Only to discover this year that there are a lot of complicated after effects, tiredness, limb pains, headaches, to name a few, but the biggest thing are the difficulties in his ability to concentrate, retain information, forgetfullness, and because of this he gets very aggitated, he has also shown signs of depression, we are struggling to get his school to accept the fact that his problems there are to do with him having had menengitis we have even presented them with information from the Menengitis Research Foundation and we feel it has been ignored. We are very frustrated because he wants to be in school but they are making it very difficult for him to cope on a daily basis... please if anyone has been through a similar situation and found a solution to help the school help him my email is shylocklisa@eircom.net.

Posted on 23 November 2011

Comment by Bill Woodward

To Jo Wilkinson
Here's some hope for you all.
My brother (14) and I (15) both came down with Meningicoccal Septicemia in 1973. He died and I survived. The after effects are huge but you can have a life.
After 6 months I was back at school with sore spine, migraines and confusion. I worked so hard to barely pass my exams. I went on to Naval College and sailed the Seven Seas as an engineering officer for seven years.
Married in 1980, my wife and I moved from UK to Canada. Worked in industry in Calgary and hunted and fished the Rockies. Had to give everything up gradually...soccer in 1982, archery in 1989, golf in 1993, fishing in 1996
Quit work due to physical limitations in 1997 and became an artist. Still there.
Two children, daughter (23) married with 2 children, son (22) philosophy student and Army reserve.
I was finally diagnosed with Complex Regional Pain Syndrome as a result of the Meningitis in 2001. I had been complaining of pain to the doctors since 1986.
After years of massive and ineffective morphine use, nerve blocks that didn't work, Lidocaine infusions that partially worked, I have a spinal cord stimulator and am back to functioning fully.
I'm not on any meds and love life.
My McGill Pain Index number was 44/50 .Now it is probably 5.
I suggest you look into C.R.P.S. and Spinal Cord Stimulation. I'm 53 and I feel like I am 35 again instead of 75. We are all awestruck by the difference after 30 years of pain.
THE MOST IMPORTANT THING IS YOUR SUPPORT! I couldn't have made it without my wife of 31 years. Oh and don't forget the sense of humour dealing with everyone who doesn't get it.
Bill

Posted on 22 November 2011

Comment by jane doe

I am 24 years old,I contracted meningococal miningitis at age 10.I died 3 times an was life flighted.I have never looked in to after math sides.Once I read all the blog I know maybe a lot of my health probs might have to do with it.I still have some scares an have had a prob with some self body things but I never tell people bout whats under the clothes.Every one thinks im so pretty an self confadent because of my looks an its been 14 years an am just starting to relize that as you get older no one cares about scars an if they do then FU.I am woundering if any one nos any kind of suport groups for it all?

Posted on 22 November 2011

Comment by jane doe

I am 24 years old,I contracted meningococal miningitis at age 10.I died 3 times an was life flighted.I have never looked in to after math sides.Once I read all the blog I know maybe a lot of my health probs might have to do with it.I still have some scares an have had a prob with some self body things but I never tell people bout whats under the clothes.Every one thinks im so pretty an self confadent because of my looks an its been 14 years an am just starting to relize that as you get older no one cares about scars an if they do then FU.I am woundering if any one nos any kind of suport groups for it all?

Posted on 21 November 2011

Comment by Travis Eldon

Truly floored after reading everyones comments. I had H flu meningitis when I was six months old. I was in the hospital for around a month, I'm told. It caused me to go deaf in my left ear and my left knee swelled up really bad. Since then my knee has always been larger than my right knee. Now at 40 years old I'm starting to experience some pain in my left knee, which is what caused me to seek information about the disease. What I never expected to find was answers to some things in my life I never associated with being sick as an infant. Depression, leading to being diagnosed bipolar II, short term memory being bad, trouble concentrating, back and neck pain, poor balance, difficulty saying what I'm thinking. It just explains so much about my life. I never knew what to "blame" for my problems, nor did I seek to. I've always thought it was just genetics. Now I know it is more then that. Truly eye opening.

Posted on 20 November 2011

Comment by Mel Casey

I have been reading you alls comments
WOW
It's me- I had spinal meningitis at 3
Horrible- doc kept sending me home saying had a cold-ear infection
Coma- near death- just like you all
Deaf in ear
I am 49 now- ear infections constant- constant horrible headaches
I shake
Constantly turn bright red
Balance is horrible
I'm starting to wonder if we are left with chronic inflammation
Also- my torso is short! And my rib cage is 2 inches wider than my sister's
I suffer from horrible bashful ness

Posted on 20 November 2011

Comment by Mel Casey

I have been reading you alls comments
WOW
It's me- I had spinal meningitis at 3
Horrible- doc kept sending me home saying had a cold-ear infection
Coma- near death- just like you all
Deaf in ear
I am 49 now- ear infections constant- constant horrible headaches
I shake
Constantly turn bright red
Balance is horrible
I'm starting to wonder if we are left with chronic inflammation
Also- my torso is short! And my rib cage is 2 inches wider than my sister's
I suffer from horrible bashful ness

Posted on 15 November 2011

Comment by Monique Barnett

My name is Monique. I am 32 years old. I have just been recently diagnosed as having Bipolar Disorder and OCD. There is no family history of mental illness on my mother or fathers side so I began to research what could have possibly went wrong. Well when I was 6 I got Scarlet Fever. In 1997 I started developing Tonsillitis every several months for 3 years, followed by several bouts with walking pnuemonia, and topped off with the final bout with meningitis in 2004. Scarlet Fever has been link to OCD due to the Strep A infection, which also can develop later meningitis, pnuemonia, sinusitis, as well as certain types of arthritis. I have found several articles on people questioning whether meningitis can be linked to the development of Bipolar Disorder. I can say that I have to believe that these are related. I know that very shortly ago nothing was wrong with me. After the onset of meningitis I have the mood swings, the forgetfulness, the headaches back pain, confusion, malaise, fatigue, and balance problems. I used to be sports active, and enjoyed life and learning. Now I have to wind up to do everything. I find some comfort in knowing I'm not alone, but I still feel isolation, because without a clear medical explanation it is hard for people to understand.

Posted on 12 November 2011

Comment by Bethany Adams

I am 30 years old. Had meningitis when I was 8-years-old. My parents took me to the hospital after I had a seizure and I was unconscious in ICU for one week and then gained consciousness and was moved to a regular bed in the hospital for one week. I had crossed eyes for a while, but they returned to normal. I have always had some problems that other people don't seem to have, but none of them seemed really extreme and I didn't start searching for the answers until the last couple of years. Today is my first day of researching meningitis. It really seems all the puzzle pieces are coming together: headaches, dizziness, lack of concentration, poor short-term memory, bed-wetting (until I was 11 years old) and continued bladder control difficulty until today (not sure if that's a symptom), difficulty hearing - but "perfect hearing" when tested, very sensitive ears (is this a symptom?). I don't want to just blame all my problems on this. I want to be reasonable about it, but I also want to be informed and not blind to the possible problems. My main questions right now are: Does it get better? Does it get worse?

Posted on 11 November 2011

Comment by frederick small

I'd like to contact Tom Kennedy, we have had similar experiences with manningitis

I would like to talk with Tom Kennedy, we have similar experiences with meningitis contracted in the army.

Posted on 08 November 2011

Comment by eileen rose jimenez

Hi my name is eileen I was diganost with b minigitis when I was 15 in a half.I had a six mounth son then iam now 25..I thought I had a flu affter a fwe days everyone was telling me to go to the er and I said later an hour latter I started talking funny saying weird things yelling and seeing thangs that wernt there my mom rushd me to the er and thay put me in icu I was in the haspital for seven days thay said if I have wated a hour later I would have died...iam 25 now I have a lot of porbloms I have back pain and serve migrans and I don't talk right all the time and ihave depersshion frome befor then I use to play baskitball bacball and was a helthy young lady now I have so menny thangs wrong with me its sad but it seems my dr thanks minigitis has nothing to do with it is there reserch on it so I can prove to him it dose because I need some dr to help I wanna be in no pain so I can live a happy life with my kids it. Hurts me so bad to know I can't run with them because my back is hurting or because I have to lay down due to a migran pleese help my e mail is.....alfredo.jimenez765@gmail.com thank u

Posted on 01 November 2011

Comment by Rachel

I contracted Bacterial Meningitis when i was 14 while visiting America on a three week holiday. At first i just thought i had the flu, severe coughing, runny nose and a headache but then i started blacking out saying wierd things and even calling my mum by a different name! My parents rushed me to the hospital where they then transfered me to St Peitersburg childrens hospital in florida. I was in ICU for a week and told doctors told my mum and dad that if they had left me for another hour longer and i would have been dead. Since recovering i have lost almost every memory of my life from before i got sick and things i think i remember im not sure are real. I am now 19 and suffer with extreme headaches, migraines and anxiety. I now realise that i was very lucky and thats all it is Luck.

Posted on 20 October 2011

Comment by Roxanne Kupper

My name is Roxanne, I am 26 years old. I was diagnosed with viral spinal meningitis when i was 12 years old. The doctors thought I had the flu, until my eyes crossed on their own. Turns out it was the pressure on my brain that caused that. I was in the hospital for 2 weeks, 1 week in ICU. It has made a severe impact on my eyesight, memory loss, and back pain. There were 7 people that contracted the disease in the same time frame that I had it in my county. I am the only one who survived and I thank God everyday for that. My prayers are with anyone who is facing this disease.

Posted on 19 October 2011

Comment by Samantha

At 18 years old I contracted viral, spinal mengitis. I was quarentined in the hospital for almost a week and was then on bedrest for a month. Since then I have had problems with my back, extreme head aches, for a short while I had fainting spells, and I find my memory not as good as it used to be. I had problems with reading and concetration since then as well. I often wondered what kind of long term damage besides hearing and balance could be caused by this illness, I also get scared, since I had the virus, that I could come down with it again. Any time I get a cruppling headache, I get nervous. Does anyone know a good place to find reserch on this?

Posted on 16 October 2011

Comment by Douglas N Mills

I was drafted into the US Army on 12-65, & on Jan. 6, 66 I came down with a rash, 6 days later, I was sent to the Base Hospital, High Fever, Neck & throat sore. I cannot remember the next 5 day's. On Jan 31-66 the lab report came back. N. Meningitidis. types B&C isolated, sulfa resistant. Have had Migraine's ear ache's, hearing problims, & Tinnitus. From Jan. 1966, & now I have arthritis, & bone & joint trouble. Was this meningococcal meningitis?? My entire basic training company was put on Quarteen!! Any answers? Thanks

Posted on 13 October 2011

Comment by crystal jaime

i had miningitis when i was around 16.. i didnt had those many thing but i did had some. now i am 22 but i have some after affects. some how my back and my brain didnt come back to their own selfs again.now i have a question everytime i pop my back there is always a ball of air flowtting to my brain and after that it always starts hurting.. does any one know why? i don' t know if its normal or if i have to go to the doctore...? any one know?

Posted on 11 October 2011

Comment by Audrey

Came down with bacterial meningitis at the age of 18 month, I am now 50 years old. The after effects I had to live with are, speech problems, I could be thinking one word and another word will come out. I love to read, I want to be writer, but grammar has been a struggle for me and still is. I have gotten ear, sinises and respitory infection once or twice a year for the last twenty years. Body tremors, balance and constant headaches, and add menopause with hot flashes and mood swings, and you misery. My father was a maniac depressed, I thought I might inherited my depression from him, but hearing your stories, I realize it could be an affect from my illness. All my life , I felt, I was border line slow or mentally challenge. I have some theories of why the survivors of meningitis have so many health problems. I like to hear from anyone who had similar experience.

Posted on 16 September 2011

Comment by Bionca Rodenfels

Okay I've read many Comments please email me @ bbengaged@gmail.com.....My bestfriend is 19 an she has a 2 yr old daughter an a recently born about 3 week old daughter who we rushed to the CHKD ER about a week or so ago....She had : green gunk caked on her left eye, it was red an swollen shut......she was screaming extremely louder than normal newborns. I'm only 17 an have been by my bestfriend's side even before she had Layla. Now Layla is about 3weeks old and in CHKD being hospitalized for Meningitis. Doctors are still unsure of exactly the cause except that her mommy my bestfriend has a bacteria in her uterus lining which they believe is how Layla contracted Meningitis during the pregnancy. Now, I'm concerned because my bestfriend keeps calling me an they have tried pickines to get the antibiotics through into Layla but, they keep getting pulled out....now she has gone under anesthesia twice to get what they call a catheter in her chest....yes they cut open her chest. I'm extremely concerned as the long term effects we could possibly be looking at.....She is currently still in CHKD an under going her 2nd chest Catheter. Please someone email me @ bbengaged@gmail.com my name is Bionca.

Posted on 15 September 2011

Comment by Alyssa Leigh

My name is Alyssa. I'm 22 and was diagnosed with Viral Meningitis my junior year of high school. My doctor thought it was mono. I missed two weeks of school and on the Friday of the second week I experienced 3 seizures back to back. I was in the hospital a short while, but made it back in time to finish the school year. Since then I experience consistent headaches and severe migraines. I've also noticed short term memory loss, loss for words, slower reflexes and balance issues. I am grateful there are so many of you who have shared your stories. Sending positive thoughts to those still effected by this disease.

-A

Posted on 08 September 2011

Comment by Shirley Gieron

Haemophilus influenzae b (Hib) meningitis used to be the most common type of meningitis in children under 5 in many countries. Since the introduction of the Hib vaccine in 1992 cases have dropped by over 90% in the UK. Symptoms & possible after effects of Hib meningitis are the same as for other bacterial meningitis. If you live in the UK and wish to talk this through tel: MRF freefone 080 8800 3344

Posted on 08 September 2011

Comment by J. Heflin

When I was 11 months old, I contracted H. flu meningitis from another baby in our church daycare. I was also septic. Luckily, my mother is a nurse and knew the signs (high-pitched cry, seizure, high fever and unconsciousness) and my folks got me to the ER (where my mom worked) right away...I may not have made it otherwise. H. Flu is the most deadly form of meningitis...At first the doctors thought I'd either be deaf, mentally disabled or I wouldn't survive, but I came out with no visible disabilities. The baby I contracted it from, or vise versa, is now mentally disabled. I'm very lucky.
I'm now 26, and I have a lot of joint related problems (mostly my back and knees). I also, didn't grow as tall as I was projected to according to my growth charts as a kid and I have a broader rib cage with a shorter torso. I'm curious if having meningitis and having been given all those medications at such a young age caused the issues I'm having now. I also have vertigo issues, bad vision and slight hearing loss. I wonder if anyone is doing research out there regarding all the issues on this blog?
I guess in the big scheme of things, I'm thankful to be alive. I just married the love of my life and I pray that I'll never have to go through with my kids what my parent's went through with me.

Posted on 29 August 2011

Comment by Peg High Coogan

In March 1994 I too had surgery to remove a brain tumor (an acoustic neuroma). In Feb. 1996 I experienced my first post-surgery head cold. Within 24 hours I was so ill I was incoherent and incontinent. I spent nine days in hospital in a coma while the swelling in my brain subsided. (The cold virus apparently migrated into my cranium through a gap in the tissue affected by the tumor.)
Over the ensuing months I slowly recovered only to succumb to a second head cold/meningitis episode in Dec.1997. This bout was less severe, but resulted in a subsequent operation to repack the surgical site (the third and [hopefully] final repack).
I have been treated for depression since the first surgery and struggle with both short and long-term memory loss. I used to be a highly organized, energetic person with an almost photographic memory which served me very well. Following meningitis, I have had to learn to accept making frequent mistakes and being disorderly due to my now much poorer memory. It has been much harder to cope with the post-meningitis cognitive effects than it is the physical aftereffects of the acoustic neuroma (which include hearing loss, facial paralysis, scarring and vestibular dysfunction).
My life following meningitis has been a constant emotional struggle, as I alternately try to reinvent myself while still accepting who I've become. As difficult and challenging as it may be, I realize it is nothing compared with the grief and suffering of those who have lost a loved one to this hideous disease. My heart goes out to all who must live with the consequences of meningitis.

Posted on 23 August 2011

Comment by alyse logie

Hi guys. My name is Alyse and im from New Zealand. When I was 10 years old I was diagnosed with Meningitis- Meningococcal Disease. According to the doctors I was only 10 minutes away from dying. Luckily I pulled through and only spent 10 days in hospital. However, since then I have been suffering from cronic calf muscle cramps. It use to happen every month or so but now it has lessened and I only get them once a year. Still they are a giant pain in the bum and im wondering if they are caused from me having Meningitis 14 years ago? I also suffer from memory loss, for example I cannot remember what happened in a movie right after watching it.
Hope we all find the answers we are looking for.

Posted on 21 August 2011

Comment by Muhd Hidayat

Hi, my name is Hidayat & I'm from Singapore. I've had meningitis twice - first, back in 2005 and it relapsed just last month, July 2011.

The first time was a bacterial meningitis and I was placed in Special Intensive Care Unit for 3 weeks. The symptoms were general - neck pains down the entire back, splitting headache, vomiting, joint pains and my eyes are sensitive to light.

The recent case, I had both viral & bacterial meningitis. Did an X-Ray and the doctor saw a blood clot in my brain. My blood and entire body system was contaminated with bacteria. I didn't expect it to relapse because the doctor said it wouldn't!
So, I would advice to those who have had meningitis once to monitor your health closely to avoid a relapse! You wouldn't want to go through meningitis twice, trust me.

Recently, I found myself to suffer from side-effects of meningitis. I had little recollection of the past years. I had trouble sleeping at night, my mood is uncontrollable; one moment I'll be happy & the next moment, I'll be angsty and all. I also discover that my balance was off even by simply standing. Residual headaches also happened. It's quite bad as its hard for me to retain information within a short period too. I'm still schooling, and I'm doing terribly so far! :(

Here's my email, speedwater_2005@yahoo.com.sg if any of you have any solutions for me. You are welcome to drop me a question too :)

Posted on 17 August 2011

Comment by paul a

i was 28 when i caught meningitis i was in a coma for six days and hospital for a few weeks i still suffer from severe headaches and memory loss and sometimes get confused i started back work for about seven years manageing to put up with the side affects but the past 3 years i have been getting dizzy spells and blackouts so had to stop working been trying diff drugs for it but none seem to help much i am now 40 and seems to get harder every day

Posted on 13 August 2011

Comment by jimmy wall

I had menegitis when I was 10 months old, my main problem is I have a speech impediment, people always ask me if I am from another country. I am from Georgia and have always lived here. I want to know if anyone else has had this problem. People always say it sounds like my accent is Irish or English. Email me at jwall817@hotmail.com

Posted on 09 August 2011

Comment by Kurt Colburn

I want to offer some words of hope for parents whose children have meningitis. I had meningitis when I was seven years old. I was in a coma for seven days and in the hospital for 17 days. I was on anti-seizure medication for 5 years afterwards. But otherwise I have thrived, have been active my whole life (I am 42 now), did well in college and law school, practiced law in Paris and later London, and now have a beautiful young daugher. I know my parents must were terribly distressed when I was sick and for some years afterwards, but now, 35 years on, it's a distant memory. Just hang on.

Posted on 28 July 2011

Comment by Tracey Wacik

I went in to hospital to have a brain tumour removed, (an acoustic neuroma). After a two week hospital stay, I was discharged home. Within 4 weeks, I contracted bacterial meningitis. Excruciating headache, stiffness in back of neck and all down the back, vomitting, and feeling very cold. I went back to the hospital and after a diagnostic lumbar puncture, was admitted. I spent 2 weeks on anti-viral/anti-biotics while they tested and awaited results.

Almost a year later now, I find that I can be talking, but can't find the words - I just go blank sometimes. I also have a stiff muscle ache in my neck, which causes a bad headache if I do too much bending. I have noticed that I get irritated very easily and keep losing my temper. I feel like I am not in control of myself physically, and not confident in social situations. Quite depressing. Some days I feel great, then another day, I feel queasy, light-headed, and scared. I know I am intelligent, but it must seem to people that I am slow or something......it is terrible.

Posted on 11 July 2011

Comment by Joyl Sartin

And i just came home 2 days ago with my baby. I cant believe this has happened. They said every 1 out of 100,000? Is that even real? How will I know if my little baby is okay? God please help me. Thank you all, and God bless to all you survivors!!! My daughter survived and it was my salvation.

Posted on 11 July 2011

Comment by Joyl Sartin

I just got out of the hospital. My baby is 7 months old. She was diagnosed with neisseria meningitidis. Bacterial Meningitis. It was the worst thing that ever happened to me. She looked dead and would not eat or anything. The doctors said i caught it soon enough to where she didnt lose her hearing, but now she has been crying everyday, and im so scared that she will die, even after she was released from the hospital. What do I do? Anyone that has this, or has had it, please call me for help. 503 719 0648. Thank you so much.

Posted on 11 July 2011

Comment by Steve Goodman

Hi, My mane is Steve. 50 yrs old. I was diagnosed with bacterial meningitis in 2000 when I was 40, hospitalized for nearly two weeks, severe sensitivity to light and loud noises & severe headaches at the time of onset. After being released from the hospital, I went back to work as a maintence tech, and I thought I had fully recovered. I was wrong. I am now experiencing severe numbness and tingling in the left side of my body, from shoulder to my foot, major memory loss, hearing loss and anti social, anxiety, panic attacks, and confusion. I am currently filing for disability, I don't want this but I don't have much of a choice. I have a Dr. I see for anxiety and just recently starting taking pain meds, I am just being carefull with those as I do not want to become addicted. I hope to get insurance soon so I can see a neurologist and see if there is anything they can do or shed some light on it. My thoughts and prayers are with those who have lost loved ones to this terrible disease.

Posted on 07 July 2011

Comment by MariaElena Castaneda

My daughter who is 8 years old was discharged last week from hospital after 6 days in there. She was diagnosed with viral meningo-encephalitis. I thought she was going to be the same happy and healthy girl in few days but now still she is not herself. She is most of day in bed, very tired and sleepy, naps long and goes early to bed. Does not want to do much, no parks, no physical activities. She is eating well and has no anemia. Now her pediatritian refered her to neurologist so I can talk with her about these symptomps that acording to her pediatritian are temporary. I am so sad to see her like this. Had to cancel all her summer plans. I Have some questions, please if you know help me: should I just let her rest? is it bad for her to take her to outings (for a couple of hours)? will it help if she rests more so she will fully recover? she seems to be doing exactly the same everyday, not progressing/getting stronger. Do you know of anybody who did fully recover? I need more faith and support, feel very sad but also gratefull she is here at home and not at the hospital anymore or with more serious complications. Thanks. We live in California, USA

Posted on 30 June 2011

Comment by Marcel

I had viral meningitis and encephalitis at the age of 5. I spent one month in the hospital and went through my life with some permanent problems but I never linked this to the illness. I am 45 now and started looking into this last year.
Like a lot of people in this blog I also have problems with my memory(short term) and hearing. Very often I also feel mentally drained after a couple of hours work. Somehow I need a lot of energy to go through the day and this makes it rather difficult for me living a "normal" live. Tasks that people do almost automatically are draining me mentally.
I tested my hearing last month and this was perfect, but as far back as I can remember I experienced problems when there is a lot of background noise (e.g. conversations going on around me). Then it's very difficult to follow or join a conversation.
The result of the problems for me was/is a social drawback. This happened slowly over the years. At the moment I am trying to turn things around but it's still very difficult and mentally exhausting. Somehow I managed to go through my study and became an engineer, but I had to put a lot of time and energy into it.
People often think I made it and have it all, but in fact I don't. I find it difficult dealing with this.
This year I broke up with my girlfriend mainly because of my problems. She didn't understand me and found me very distant a lot of times. She was not the first one saying that to me.
I can't say for sure that my problems are related to the illness, but it seems plausible considering all the info there is on the internet. None of my family members suffers from these problems. Because I was only 5 years old makes it rather difficult for me or others to compare the way I was before and after the illness. According to my mother my behavior had changed somehow but I don't know in what way.
Thanks for giving me the opportunity to post my story. I am glad to know I'm not alone in this.

Posted on 26 June 2011

Comment by andrew cuthbertson

hi i am andy im 46 yr old male and at 16 months old i contracted meningitis the gp i saw at 1st told my mum it was flu but my mum didnt believe it so took me to hospital i went into coma in a&e and stayed that way for 3 weeks doctors told her i would be brain dead deff and blind if i ever came out of coma however i fully recovered though at 1st my mum said was like having a 18 month old new born. by time i was 3 though i was like any normal 3 yr old , only real symptom i can say i had in my early years was i can never remember names so have always had problems in new situations were there are lots of people i dont know more recently over last 10 yrs i have suffered with cramps ,headaches, short and long term memory loss and trust me there is nothing worse than your brother or m8 saying can you remember when we did such and such and you cant even remember being there let alone what went on, also have noticed hearing problems over the years not so much depth of sound but more unable to hear when lots of people talking or deep background noise ie traffic, other problems i have started to notice recently are pains all over, and numbness in my feet and hands which i am about to see a doctor about, have always wondered if, anything i have gone through in life or if i would start to get problems from having meningitis, however i am 46 at 14 months old i was as gd as dead i have had an amazing life some bad bits some gd bits some bits i cant remember am getting ready to get married for the 3rd time to an amazing woman have 5 kids and so far 2 grand kids so i say u either let it beat you or u live with it and ride it like a wave enjoying those moments that make life worth living bring it on. andy

Posted on 24 June 2011

Comment by scott lewins

i caught meningococcal septicemia in 1997 and had my 6th bithday in hospital because of it:p (im now 20)

after the initial after effects of difficulty walking again,pain in the legs etc i started to have behavioural difficulty's at school leading to multiple expulsions and a fair few different schools i was also later diagnosed with dyspraxia (poor coordination and fine motor skills) apart from the mental issues however i have also always suffered very badly with headaches and migraines on a very regular basis i also have tinnitus and quite poor hearing my eyesight is also not fantastic

i have got quite shaky hands as well i can never seem to hold them totally steady.

these are about all the after affects i seem to have hope i was of some help

Posted on 23 June 2011

Comment by Tam

Hi I am 32 years old. I had viral meningitis 4 weeks ago. The first paramedic said it was migraine and said I would be wasting resources if I went to A &E so they went. Half hour later my symptoms got ten times worst and the out of hours GP sent for an ambulance for me. Luckily they took me seriously.
Arrived in the A&E department and I was being treated for migraine again. My mum arrived later and told the dr's I was confused and they started to take me more seriously. Luckily my care improved and I was automatically treated for for meningitis until they knew the strain. luckily it was the enterovirus. I had never felt so ill my life.
The after affects are taking its toll on me I have awful head aches,fatigue, stiff painful neck,muscle pains and I'm very irritable.
I hope by writing this it would help other people and ensure others aren't ignored by health professionals when they complain of headaches and other associated symptoms. If it had been bacterial / septicaemia my symptoms could of got a lot worse quickly.
My symptoms were identical to bacterial but no rash, which isn't always present anyway.

Posted on 09 June 2011

Comment by Sigrun Eggertsdottir

I´m a 36 years old Icelandic female. I had meningitis when I was around 2 years old. I was in the hospital for some time. I just cant remember at the moment how long my hospital stay was but I think it was around 2 or 3 months. The doctors didn´t think I would make it but I pooled through. I too had to learn how to walk again. I always knew that my hearing lose was from the meningitis but I was not willing to listen to my mom when she would kindly tell me that some of my struggles might be from the meningitis. It was only 2 years ago that I looked up the long term after effects. This was one of my sadist days in my life when I realized that I had to except that my short term memory lose, short temper, sadness, feeling out of place, poor concentration, not understanding new words that do not have anything to do with an experience of mine or a feeling, and hearing lose was all from having had meningitis.. I remember more of things that touch on feeling then things that don´t concern me too much. After realizing my condition, I´m amazed that I graduated as a Graphic Designer with Highest Achievement Awards and Honors. I´m revisiting my symptoms after getting a divorce in Dec. and I´m finally talking to a doctor and asking for help for the depression that I have had since I can remember. I need to go find a job now that I´m divorced, but I´m finding it hard to believe that I will be able to achieve what will be expected of me. I Thank you all for posting your stories here. It makes me feel not so alone anymore. God bless
Sigrún

Posted on 08 June 2011

Comment by leanne dexter

Hi im Leanne
I am so glad i found this site , had meningis & septiciemia at the age of 4 after being in a coma and and several months in hospital was given a clean bill of health , often wonder if my parents were told about the long term side effects as they have always treated me different .
i am 38 now and strugle with memory loss , deppresion , back problems and wont even start with relashionships !! fiiends and family say im in a world of my own we call it leanne land ! i laugh it off but have allways wondered is it my personality or the meningitis ? any help will b greatfully recieved
leanne x

Posted on 07 June 2011

Comment by Devlin Kearns

My name is Devlin and I'm 21 years old. I was diagnosed with meningococcal septicaemia when I was 6 years old. The doctors said I would have side effects but until reading these posts I never realized things that were happening to me, like my memory loss, trouble learning, trouble hearing, and balance problems could be from the meningitis. Lately I've been having horrible chest problems and it feels like someone is sitting on my chest and my throat is closing, and I never knew why. I haven't been to a doctor since I had my daughter over a year ago, and I'm thinking I should probably see one soon.

Thank you all for your stories and experiences, and my heart goes out to all of you.

Posted on 05 June 2011

Comment by Lisa Adams

After having meningitis at 13, my parents say i changed, I was different, depressed. I was a self mutilator, and suicidal. never did i put it together that it could have been caused by the meningitis. Since then, I have been through the air force, because the memory and learning issues had issued a drive inside me to strive to be normal and do well in spite of them. I still struggle with possible seizures and bouts of severe depression, I am now 33 years old, but am just now putting this all together in my mind, could it all be related?

Posted on 03 June 2011

Comment by Jeremy Ramirez

Hello everybody my name is Jeremy and my story is very similar to Catrina K. I was also 3mo's old when I was diagnosed with Spinal Viral Meningitis and am now 29 years old. My parents have told me that I was extemely lethargic and had a fever of 104' when I was rushed to the hospital. The doctors believed I would die or be left in a vegitative state. They wanted to place a shunt in my skull to relieve pressure on my brain but my parents refused and placed thier faith in God and I survived.
The after effects of my bout with the illness are short term memory difficulties, constant fatigue, nearsightness(and floaters in my vision) depression and recently it has become increasingly difficult for me to have a normal conversation because I often forget what Id like to say or fumble for words. I am thankful for finding this site and believe we should all be advocates and let others know about the long term results of meningitis.

Posted on 05 May 2011

Comment by Kylie Rose

When I was 10 years old, I was dignosed with Bacterial Meningitis. I only started to get treatment about a week later. Now, I am almost 16 years old and seem to be getting some other symptoms. I get headaches more often, dizziness, stiffness in my back and neck, and other common symptoms. Does this mean that I might actually get sick again?

Posted on 05 May 2011

Comment by Keith Hayes

Hi

I have a immunity issue and have contrcated meningcocal meningitis 4 times in y life time, and have been lucky not to have died, however this recent episode has left me
with significant hearign loss , Balance issues , Memory problems, Head aches, and also muscular pains in legs..
I fully sympathise with any one who is left with health issues stemming from meningitis .

I am 50 this year and Im so disappointed to have another attack at this age , which has now effected my quality of life detromentaly .
If you want to chat about this condition feel comfortable to email me direct
keith.liz.hayes@ntlworld.com

Posted on 10 April 2011

Comment by Lisa Marie

Hey Lisa... And Catrina
I had a similar experience when I was two. I have permanent amnesia and cannot remember my life before the age of 10, and most of my life is hazy. I have balance issues, lowered immunities to bacterial infection such as bronchitis and sinusitis, PCOS (though that's genetic), and various other things.
I recently encountered a new thing though that might help you in your balance issues.
I had a sudden attack of dizziness that would not go away. It progressed to constant vertigo. Soon it settled on dizziness and vertigo with pain at loud or low pitched noises. I tell you all of this because they believe it is related to my meningitis. I have Superior Canal Dehiscence. The upper portion of the tubing in my ear was weakened when young, causing imbalance. A recent encounter with a virus finally broke though.
You should have the doctors do a high res CT to see if this might be part of your problem. I know it can't make everything better, but SCD is fixable with surgery.
Ironic that my name is Lisa too... The doctors waited for me to die. They told my mother when I servived that I was def and blind and would probably be a vegetable... I didn't walk again until I was 4... My mother's favorite saying is "Everything is ok in the end. If it's not ok, it's not the end." I'm not a vegetable. Nor am I def or blind. I count myself lucky.
If you guys ever wanna chat, let me know. Misery love company, right? :)
Lisa H.

Posted on 06 April 2011

Comment by Catrina Kimber

My name is Catrina and I was diagnosed with Viral Spinal Meningitis at the age of 3 months of age. I'm now going to turn 28 and I also feel my health is getting worse. I can remember parts of my life but its like my memory is slipping away more and more. Its been a struggle my whole life but I have beat the odds out of the park. Having a normal life is not going to happen so I have begun to deal with that part. I have no mobility on my left side of my body and its not operable at all. So I totally get how you all feel maybe we should have a chat session I finally dont feel alone or out numbered anymore

Posted on 28 March 2011

Comment by Letitia Gene Carter

My sister Star is currently hospitalized due to having contracted Bacterial Meningitis in November 2010 the day after Thanksgiving and two days before her 43rd birthday. She is paralyzed completely from the neck down and unable to speak due to the respirator trach in her neck. She also contracted AcinetoBacter while in the Surgical Critical Care Unit it is the Iraqi SUPERBUG which is antibiotic resistant. There is a chance that Star can be rehabilitated to the opoint she coulod possibly talk and with any hope get some function back in her body for she has shown signs of some feeling in her feet and arms. NO rehabilitation facility seems to want to take her due to the acinetobacter and a bed sore that she got the first month in the hospital. Our family hass exhausted all funds and we are in desperate need of help with monetary funding and gas cards to get me back to Tennessee so my Mother who is disabled and 70 years old can go home. It has been five weeks since I was last in and the doctors say my sister responds better for me than for anyone, they recommended my mother get me back home as asoon as possible for they are saying now if she cannot fight off this Acinetobacter it will eventually kill her. We are in a war against time at this point. I have set up a website for any donations anyone can possible give to help my family and help me to get home. Donations can be made to http://www.starellismeningnitishopefund.bbnow.org or made directly to any Wachovia Bank to The Star ELlis Meningitis Hope Fund acct.9735. This is our only hope now for I do not know where else to turn. I am fighting to bring forth Awareness throughout the Sate of Tennessee so that people will know of this SILENT KILLER and working to get petitions signed to pass STAR'S LAW which will make it mandatory for all children 2-18 to be vaccinated against this deadly disease. I will not stop but will continue to educate and bring about awareness to anyone who will listen. This disease knows no prejudice and can strike at any time. Had we known of the vaccination mu beautiful sister might not be lying helpless in a hospital bed unable to see the sunrise or the snowfall or to call her daughter to say I love you. I cannot let what has happened to my sister and to others be in vain. I will work side by side with this Foundation and any others to help in any way possible. May God Bless You ALL!
Love Letitia Carter

Posted on 26 March 2011

Comment by Edward Tryan

I had a lumbar fusion in March 2009, which gave me meningitis. 10 days in hospital, sent home with a pic line of antibiotics to my heart and a nurse visiting everyday to change the antibiotics. I was never given any information on long-term affects of meningitis. Currently, I am experiencing nauseating headaches, numbness in my left hand, blurred vision, neck pain, sensitivity to light and mood swings. I was unaware this this could be "recurring" until I found this page. My doctors don't tell me anything. (Appearantly my symptoms don't really exist). Has anyone found ways to relieve these problems?

Posted on 13 March 2011

Comment by Mia Escrit

I had meningitis my last year of college. One evening I felt extremely sick and knew that it was not anything common like the flu or cold - I experienced nausea, stiff neck, fever and it all came upon me very quickly. This was easily the most terrible feeling I’ve ever had in my life. Luckily, my father was there to rush me to the hospital.

The doctor’s performed a spinal tap on me and diagnosed me with meningitis. I was quickly loaded up with all sorts of combating drugs. The next two weeks in the hospital would be the most painful ordeal of my life. Wishing death and calling out for my mother was a regular occurrence. I could not drink or eat anything without vomiting and was fed intravenously through needles that constantly fell out and had to be put back in.

Then one day, I felt better. Boy did I want to go home. They performed some tests and then in a day or two, I experienced an extreme euphoria – I was released. This euphoria lasted for about a week and then I dropped into depression for a couple of weeks. I became less detail oriented as I used to be. I have had family said I was different after the sickness. I came in and out of depression. I had less focus, I read a little slower. I still experience these things and it’s been 8 years…. I’m unsure whether this is just me or the effects of meningitis. Anyone experience this?

Posted on 05 March 2011

Comment by peter cook

hi
i had viral meningitus when i was only 1 and a half , the doctor told my parents i was going to die and there wasent anything to stop it , but one doctor had helped me pull through , i know seem to be up and down in moods alot and feel out of place alot

Posted on 03 March 2011

Comment by Jessica

I had meningitis after a few days old. My family was told that I was going to die. It was something at the time that no one really knew much about. I had the seizures, and loss of feeling of my body. I went through physical therapy until I was a year old. Once I started trying to talk they noticed that I had problems pronouncing easy words, and so then I was put throught speech therapy through school until I got to Junior high. In Junior high was placed into special education courses. Its kind of weird I can remember rythems like music but not when someone talks to me. My mom can tell me good news and within a matter of minutes i can get destracted and forget what the news was. Its tough dealing with the memory issues, espicially me because I don't tell people unless I feel like they need to know. Some people look at me like i'm crazy when they tell me something and then turn around and are asking them again. It makes me very frustrated pretty much all the time and also stressed. I have come to learn that writing things down is pretty much the only thing I can do to remember it helps alot, especially making list to do.

Posted on 10 February 2011

Comment by Thomas Kennedy

I had spinal menningitis when I was in the army
in 1963. I am now 66 and have numerous medical problems can some tell me if it is possible to have delayed after effectsbfrom this

Posted on 08 February 2011

Comment by Marie Woodcock

hi my son had meningitis setiicaemia when he was two years old he is now thirteen and he has got quit a lot of problems now, he is partly brian damaged. loss of balance, loss off co ordenation in his hands, bad behaver problems , he has lost the tip of his finger and also the tip of his big toe and the tip of anouther toe,,

Posted on 01 February 2011

Comment by edith granizo

Hello everyone.. sorry to hear about all these after effects from the meningitis.
I'm here to tell my story. I am to the point where I can't sleep afraid and confused. I feel like there is no way out and like there is no one that can help me. My adopted son is 5 years old. He has had meningitis at the age of 3 because of a head injury he had from his birth mothers abuse towards him. Ever since that he has been struggling with meningitis. He has had meningitis 4 times now. He gets it every other month. I'm scared of losing him. Because of the head trauma he has gone completely deaf from one ear and barely hears from the other, he also has speach problems and thyroids. I adopted him because I knew he needed love and care. I didn't think it be this hard but I feel as if its all worth it because I have him near me and he is getting the love and attention he needs. Traveling to his appointments haas ben hard since my car is a 1996 and it only goes so far. I've gone far with the car and now its smelling like burn, I guess the car is breaking down . But my lord is an amazing god and he will help me thrue this. I was wondering if anyone had a similar problem.. no doctor wants to see him or do surgery if needed. They all brush me off and say no. Its like I'm in a deep dark hole with no way out. I pray every night that a doc around helps me. Its sooooo scary to think I could lose him because of this meningitis.. still no one can help me. My eyes burn from crying sooo much. I fell in love with my child its amazing.. it almost feels like I gave birth to him... if anyone knows any info that can be useful for me pleaseeeee email it to me at cloud9designz @ymail.com thanks you and god bless..

Posted on 30 January 2011

Comment by chelsea kees

Hi i to had bacterial menigitis in the summer of 2009. me and my husband just got married and i got a sore throat one morning and then it just got worse my husband left and went to work and i stayed home and went and got in the bath about 5 mins being in there i couldnt feel my legs so my husband had to come home and get me out the tub. by that night i had done got so bad i couldnt respond to my husband when he tried to talk to me. then about 10 that night my body started burning he then realized i had red sores all over me including in my eyes! he then took me to the hospital i couldnt walk so he had to bring me in. they transfered me to another hospital where they said i had that and that i wasnt going to make it to call my family in. i was in icu for 3 weeks and in the hospital a total of 2 months. i couldnt walk they had to teach me how to walk again and i was a dance teacher and the dr said i will never dance again.... i proved him wrong! he also told me not to get pregnant atleast within a year... my year came up when i was 7 months pregnant and we now have a healthy baby girl! i do get headaches everyday and i cant get rid of them. ive been to the doctor and theres nothing they can give me. but i will say i am blessed to make it out alive and not have many problems and now i have my baby girl!

Posted on 27 January 2011

Comment by Stephen Pearson

Hi Lisa, I wonder if your problems stem from having had menigitis as a baby when the brain is still developing and the inflammation has resulted in long term problems. I feel emotional reading everyone's experiences as I had pneumococcal meningitis 7 years ago at the age of 45. My wife found me wandering around the house in the morning and called our GP who arrived within 20 mins and I was rushed into hospital immediately. I was ventilated on ICU for 5 days, in hospital for 2 weeks and off work for 18 months. My recovery was slow and I was fatigued and couldn't concentrate for 6 months. Slowly I have recovered and after 4 years I think I was fully better, my problem latterly was tiredness. My wife still feels that I am slightIy different in some way. I do feel so lucky and my heart goes out to those of you have ongoing problems.

Posted on 24 January 2011

Comment by Gard Meserve

I had meningitis back in 2003 and was very lcuky to survive. I returned home after a month of treatment and had serious speech issues, memory problems, depression, and pain. It took me a year to return to a somewhat normal work environment but actually it has never quite returned to normal. Over the last 7 years I have had a cyclical pattern where the symptoms return for a period of time with a vengence and then they subside. The depression and memory are hte worst. It can last for up to 15 days. Now I am 48 and I find that the symptoms are becoming so much worse. I cant remember my granddaughters name at times, I cant remember a conversation from the previous day. I need to be constantly revisiting details so that I can remember project elements. The one good thing is that I can watch a movie several times and most often it is just like the first time. My favorite thing to do is watch television because there is no stress, no expectation, nothing to remember. This disease stole my memories from children's childhood - my x-wife stole the photos (which were my only memories of these years) when she left. Now the disease is stealing memories from my today. I hope you all find peace in this and I hope your futures will bring you relief and joy. It is a difficult season of life with the lasting impact of meningitis. But there is always hope.

Posted on 20 January 2011

Comment by Elizabeth Kirton

I had meningitis 5 years ago and pheuma i am now left with very bad memory loss, no track of time, very bad fataige, muscle ache, poor concentration, clumsyness, and short tempered. I am 40 years of age but have felt like 100 years of age, had been living on red bull up to 8 cans a day, now just been prescribed tablets from doctor to give me energy, thankfully they are working. I have had to change my lifestyle to accomadate this illness. only now am i recieving the after care, Good luck to all who have had this illness.

Posted on 14 January 2011

Comment by Julie Dunne

Hi everyone, its very interesting to hear about the after effects of meningitis.
I'm 38 now but when I was 18 months old I had meningitis 4 times over a 6 month period. They then found out I had a dermoid cyst and tube of sinus pus on my spine which they think was causing it, I had 2 spinal ops to remove them.
In 1997 (23 years after the meningitis) I got an inner ear problem which has left me with dizziness, tinnitus (no probs with hearing), vertigo attacks and off balance. Doctors cant say whether its to do with the meningitis but I think it is. I vaguely remember having very occasional dizzy spells in the past but not like what i'm having now. I've always been shy, nervous, and a worrier so from what i've read this could be to do with the meningitis. Also my mum said the doctors didnt know what I would be like later in life because of all the injections, antibiotics and lumbar punctures I had, and they said I would most likely have problems when i'm older.
Julie

Posted on 16 December 2010

Comment by Matthew James

Hi my name is Matthew and I got bacterial meningitis when I was seventeen. My doctor at the time passed it off as flu and three days later when I was in a coma my father was told by the doctors at the hospital that I was unlikely to pull through. Fortunately I did and I am grateful. The problem I have is that before meningitis I was quite a confident and regular teenager but since meningitis I just don't feel right anymore. I find it hard to communicate and be around people which never happened before. I'm 31 soon so I've been living with this for quite a while as I don't want to make a fuss but lately I've been feeling pretty bad about it. Amazingly I've got a wonderful fiancé, two amazing kids and a job that I've had for almost ten years. My fiancé is pretty much the only person I can talk to and I've kept my job because I work on my own and don't have to talk to anyone. I'm just worried what will happen in the future. I can't help but think I'm like this due to meningitis and just wondered if anyone had experienced this?

Posted on 02 December 2010

Comment by John Braemar

I had bacterial M (Pneum) in 2004 when I was 55. Arrived unconscious and fitting in A&E but fortunately pulled through. Was in hospital for 16 days and off work for 3 months . Had numerous typical after effects, tinnitus, memory loss , lack of concentration, giddiness, temper swings etc. After about a year I was O.K. apart from learning problems and a lower temper threshold.
From reading the comments in the forum I think I was pretty lucky and can only say to others that hopefully their condition will improve eventually. Absolutely horrible disease.

Posted on 02 December 2010

Comment by vivien Stewart-Wood

May I say my thoughts go out to you all with the struggles and suffering that encompasse you all every day.
I want to mention, I have never had meningitis but my son had meningitis/septicimia when he was 8. Three doctors missed this in 1990 but by some miracle, he got over it when a consultant on duty suddenly realised the disease and he was given flucoxiciline interveinusly. He picked up remarkabley well and is now 27. I am greatful evry day for that recovery.
My question to anyone who is enlightened is, is dyslexia a know outcome from those who have been afflicted with meningitis?
Jonathan appears to have problems which I suspect are attributable to the disease.
Many thanks and may 2011 see better outcomes for you all.
Vivien

Posted on 01 December 2010

Comment by Michelle Isler

I had Bacterial Meningitis in April 2007. It started with ear infection and by the end of the next day I was babbling and losing my motor skills. I had a history of migraines so I assumed it was that. My husband got me to the hospital and I went into a coma for a week. I was 42 at the time. I had the infection eat through my blood brain barrier and infect my brain and spine. I barely survived but it would not leave my spine for three months. I am deaf in my right ear and now I am experiencing extra sensitivity. Too cold, too hot, too loud, cannot hear, smells bad, etc. I hurt all over. I thought it was Fibromyalgia. The only time I get relief from the pain is from Vicodin or Percocet. But my doctor says she cannot prescribe these to me anymore. I have a bulging disc from the five lumbar punctures I received. Yesterday my doctor said she was sending me to a pain managemnt doctor because these pains that I have do not relate to the meningitis. The only catch is I was NEVER sick like this before meninigitis. I would have a headache or flu, but now I am exhausted from living with pain all the time.

Posted on 15 November 2010

Comment by Lesley Hart

I contracted bacterial meningitis group b back in May 2010. I live on my own and presumed it was another migraine and ignored the symptoms for 36 Hours. I finally gave up coping with the pain and called NHS Direct. they were amazing and diagnosed me straight away, called an ambulance and got me to the hospital really quick. within 1 hour i became unresponsive and remember nothing from the Saturday to the Wednesday. aparently at 1 point the doctors didnt think i would of survived for longer than 6 hours if I had stayed at home any longer. I stayed in hospital for 10days. I now have tinnitus, blackened skin around my eyes ( looks like ive been in a fight and come out with 2 black eyes!), my short term memory is useless, i can stop mid sentance and not remember what im talking about, my brain doesnt seem to recognise the feeling of thirst, hunger, needing the loo and needing to sleep, my hearing is super sensitive, my temper has changed dramatically and i have a pain in my back from where the lumbar puncture was done. unfortunately there doesnt seem to be much medical help for after effects. if it wasnt for the meningitis research foundation i really wouldnt know what to do. the doctors just think im being a pain and dont help much at all. the answers i always get it see what happens with time.

Posted on 15 November 2010

Comment by Srinjay Basu

My thoughts and prayers goes out to all whose lives have been affected by this terrible illness.
I am 34 year old living in Delhi, India. My father (age 64) has been battling this disease since April 2010. At first he often complained of headache and fever, but we thought it to be just a normal flu so didn't pay much attention at first. But when visits to GP did not work out successfully, he was admitted in August to a bigger hospital and CT scan showed "pituitary mass" and we were told surgery was the only way out!! But that changed our lives. He was diagnosed with pyogenic meningitis as a result of surgical complication.
And even now after 3 surgeries and approx 70 days in hospital, he still hasn't been able to recover. He was in a coma/deep sleep like state for few weeks and now due to be operated again in next few days.
From a fully active person, he has turned into this person who has balance problems, constant headache, worsening senses, urine incontinence, disorientation at times, and constant relapses. Worse of all the doctors have not been able to identify what bacteria is causing all this, so whatever happens they simply blame the meningitis for his condition. Our lives have changed in a way we never ever imagined even in our worst possible dreams and the one that just does not want to go away.
Isn't there any way to identify the bacteria causing this if all the culture reports are negative??

Posted on 15 November 2010

Comment by Cathy Sutherland

Lisa, I am sorry to hear you are still having problems. I am on the other end of this as I am still trying to get better after pneumo strep bacterial meningitis in April 2010. I have almost all of the same symptoms. Almost a continuous crushing headache, bladder/ kidney infection once or twice a month, balance problems, my ear is hypersensitive, dizziness, light & sound sensitivity, my heart rate & BP has sky rocketed since then, I also have the twitches & spasms, It feels like I have had a stroke as I can't remember anything & it takes me awhile to process things and I am weak on my right side.

Good luck to you & I do believe the symptoms could be from the meningitis as I am only 7 months out & having the same type of symptoms.

Posted on 15 November 2010

Comment by Jayne Wangler

My mother-in-law had bacterial meningitis about 5 years ago and has all the symptoms of Alzheimers. She has lost the ability to remember things short term, but can remember everything from 50 years ago. She has lost the ability to do everyday personal care, I have believed that it is not ALZ but a long term result from the meningitis for the last 2 years. Our Dr. say they don't know. With all the different tests and scans she has had, I think they should be able to tell if her brain is deteriorating from meningitis. This is where we turned for answers. Please help!!

Posted on 09 November 2010

Comment by Melissa

My name is Melissa and i was diagnoed with spinal meningitis when i was 14 years old. I was in intensive care for 2 weeks, and in the hospital for over a month. I am now 28 years old and have been suffering with balance problems (dizziness), fullness in the ears, chest discomfort and headaches for the past year now. I never even thought to relate my problems to my past meninigitis experience, but after reading all of your posts, i am starting to think that this could be a possibility. I have seen the doctor numerous times but no resolution...maybe i should mention this possibility. Thank you all for sharing your thoughts and my prayers are with you all!

Posted on 05 October 2010

Comment by janean smart

i cant believe it people exactly like myself,I too was diagnosed with bacterial meningitis 5 yrs ago and was in a coma for wks on end,and not expected to pull through, but here i am fighting every day with exhaustion,awful headaches numbness in my arms i never thought for one moment i would feel so awful after all this time, i was really active, swimming running marathons with my brothers, teaching aerobics, today i am only a shadow of that person and am so frustrated, there should be something for us unforgotten sufferers has we did not ask for this dreadful thing,to all out there who have had some sort of meningitis i pray to god to get you back on track and to wayne god be with you and your little girl at this sad time.

Posted on 24 September 2010

Comment by Gary Frazier

Like many, herein, I was a child (of ten), when I was stricken. However, unlike most, I was deafened (I say that because I'm fairly sure I am the only Deaf person, who can write this).
In 1998, I saw Dr. Scott, at a local restaurant and, when he realized that half-dead 10-year old was a, fully-alive 37 year old man, his chin dropped.

Over the years, I've had shunts placed from my brain to my heart and, later to my abdomen, the latter shunts were placed, so as to relieve pressure on my brain and, when my second shunt broke, after 27 1/2 years, I nearly lapsed into a third coma.

In 2007, I joined the Meningitis Angels and began telling my family and friends about the vaccine that could save their kids' lives.
I was shocked that so many of them took a flippant attitude and my own sister accused me of trying to start a panic.

Posted on 10 September 2010

Comment by patty collesano

a family member had menengitis in 1980 he was three years old at the time. he does have seizures that are controlled with meds. he seems to have memory problems.,, bladder problems and he did have to learn all functions again. considering all this he is doing well but I was wondering if a person could have a personality disorder after menengitis as he grows into adulthood

thank you

Posted on 01 May 2010

Comment by Jo Wilkerson

My husband had viral menengitis in november 2007. The ER docs said he had the flu. We insisted that it was not . Finally the dx him with menengitis. atmitted him to to hosp. Thank God the doctor started him on the meds that he did or he wouldn't be here today. He then in june 2009 was dx with mollerats menengitis. He has severe pain most of the time. very poor memory, balance issues,headaches, fataige, muscle aches, joint pain, hands don't work right, pain meds don't work anymore. we were at md today and they suggested to get on line. please help he is only 35 and feels like he is 85.

Posted on 29 April 2010

Comment by Barbara Maines Whaley

My father had Bacterial Meningitis 4 years ago that he contracted as a result of an ear infection. He survived and initially could not walk or feed himself, but after 2 months in rehabilitation he appeared fullly recovered and went home to live independently again. At the time he was 83 years old and very sharp mentally. About 2 years later, he began to develop balance problems and some other issues with using his hands to do tedious work. These symptoms worsened, and he experienced several falls, which resulted in hospitalization and eventually living in a long term care setting. He now has lost ability to feed himself, walk, has lost bladder control, and has difficulty talking. Meanwhle, the doctors have diagnosed Alzheimers disease. However, my father's memory is still good. He has a longstanding hearing impairment which existed before the meninigits, and basically he is about 80% deaf. My problem is that the nurses and physicians all assume he has Alzheimers, but I disagree. I believe all of his symptoms relate to the Meningitis, and right now, he is terribly frustrated due to losing much of his physical capacity, but being still sharp cognitively. Has anyone heard of this type of effect of Meningitis? or heard of it being confused with Alzheimers? Barbara

Posted on 30 March 2010

Comment by Alan Crawford

I too contracted Pneumococcal meningitis at the end of 2008, saved by the good fortune that my beloved wife ignored me telling her I was fine, just a migraine, I work within the NHS and should have known better. I have spent a year getting back to work, that was my goal, but things are not as before my balance can on certain days be very bad, along with exacerbated hearing with certain things such as plastic bags / crisp packets newspapers being crumpled and my memory can be very short term, stopping during a sentence then forgetting what I was talking about, I think I am hiding it but a good friend was honest with me the other day and told me what a bad day I must be having as he noticed things were not right. I have made appointments now through my GP to follow up these symptoms which I believe to be getting worse. I am more than grateful to be one of the lucky ones and now realise that each day no matter how difficult is a blessing, my children give me everything I could ask for and I thank who ever for sparing me and for giving me this extra time with them.
I like no doubt others wish things would return to as before and my heart goes out to you Lisa and wish you all the best, and to Wayne and your daughter, Misty would I am sure wish be proud that you could say the things you said with such meaning. Be strong, it does not get easier with time but you do learn how to cope.

Posted on 02 March 2010

Comment by wayne ledbetter

My name is Wayne. Im 29 years old. My daughter is 5. We just lost her mom to meningitis on Valentines day. Her name was Misty Strong. She was 28 years old. She was the greatest woman i ever knew and its so hard to raise our daughter without her. We miss her so much

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