Meningitis in your words

Dina Pancholi's story

  • Location: England
  • Categories: Tuberculosis (TB)
  • Age: Young Adult 20-25
  • Relationship: Self
  • Outcome: Recovery with after effects
  • After effects: Co-ordination problems
Dina Pancholi

It was a Sunday and I woke up with a temperature of 39 degrees.

Straight away I took paracetamol to settle the fever. Later on in the day I went to sleep and woke up feeling like my head was about to explode. What could this be? I then asked my mum to take me to A&E as the pain of my head and neck could not be tolerated. A&E then carried out a routine blood test, ECG and X-Ray. I was then sent home with amoxicillin and said I had a viral infection, meningitis and TB was not on the cards as I had not travelled and had no rash present.

My second day, I went to the Acute clinic at LRI where I was diagnosed with Viral Pharyngitis? Sore throat… Really? I hadn’t even mentioned a sore throat.

"I had no physical, mental or emotional strength to carry on."

Later that evening the antibiotics had given me nausea, I was sick so much that my back had seized and after ringing NHS direct several times, I was then carried to A&E where they thought I had a ruptured appendix, which wasn't the case. I was put on a drip as my whole body was shaking and I was dehydrated. The doctors then asked the same questions, had I travelled and at this point my mum even mentioned meningitis but the consultants were adamant it wasn't.

For the next seven days the fever would not settle. I was in and out of A&E and the GP thought I had lymes disease. I had been miserable and unwell to the point that my temperature was at 40 degrees. I felt guilty as my mum who is a single parent, was caring for me. I had no physical, mental or emotional strength to carry on. I was feeling uncomfortable, constantly had a stiff neck, head pain that was unbearable, my joints ached and pain when going to the toilet, however the doctors in A&E just kept saying it was a viral infection?

"A lumbar puncture was carried out six days after I went to the acute clinic and as I was deteriorating"

A week later I had a follow up at the Acute clinic at LRI. The senior GP saw through me and said, “for a 24 year old you do not look well”. My kidneys were checked for infection but was all clear, she wanted to carry out further tests to see what was wrong. The following day I went into a coma, however I was weirdly in and out of consciousness. A lumbar puncture was carried out six days after I went to the acute clinic and as I was deteriorating, the infectious disease consultant had to especially come in on the weekend, as I was very serious and no one was aware of my condition. The neurologist carried out tests for me to show signs of alertness like pinching my toe nail and back of my shoulder, but no response.

I was then sent to intensive care, as my breathing was deteriorating, I was then tube fed, catheterised and pumped with ‘domestos’ as the ITU nurse described to my brother.  A week after I went to the acute clinic I had woken up, my body had reacted to the TB medication, however I lost my speech, my sight was double, I had muscle loss and therefore I couldn't walk due to being bed bound for a long period in hospital. TB caused me to be really tired, I would sleep constantly and would get tired eating and talking.

The lumbar puncture result, MRI and the fact I reacted to the TB medication concluded it was TB that had affected the brain and caused meningitis. Weirdly I had no signs of TB elsewhere in my body.  I was constantly X-rayed, had MRI’s and was CT scanned to see if the bacteria had spread.

TB in the brain is not contagious so it was a relief for the family, it can be caught by people coughing and sneezing so good hygiene is essential.

I then had a further two lumbar punctures to see if there was pressure in the brain. Normally brain pressure is 20CSF or below, however my first test was 35CSF and by my third lumbar puncture the pressure was 25CSF.

It took me three weeks after intensive care to be more confident in walking with the help of physio. Being tube fed also affected my bowels until the tube was removed and I felt more confident to go to the toilet.

The catheter was in for two months as I had gone into retention twice; it is weird how the bladder forgets how to release urine.

I was discharged from hospital after five weeks. I am currently on treatment for a year. For the first two months I took eight tablets a day, along with steroids, however I did have the medication intravenously for the first two weeks. The milligrams are very high but after two months the tablets drop to three a day. I cannot drink alcohol due to liver damage from the tablets and cannot wear contact lenses as one tablet causes the bodily fluid to turn orange.

With my families dedication, positive outlook and prayers I have recovered very well and I am lucky to re-gain my speech, writing, sight and I have no loss of hearing from some of the testimonials I have read.  I however have vertigo and balance problems which will hopefully rectify in time.

Meningitis is a serious and life threatening condition, please be aware of the symptoms and save a life.

Dina Pancholi
September 2013

Detailed information about the after effects of meningitis

Many of the after effects of meningitis aren't immediately obvious. In this blog, Support Manager Cat explains how we can help.
Stories that inspire us to create a world free from the diseases.

Whether you are living with the after effects of the diseases or coping with the death of a loved one, we are here for you.

Provide a lifeline for those in need
Provide a lifeline for those in need
£6/€7.20/$8 pays for a 30 minute call from a trained support officer.

They listen to the issues faced by someone struggling with the impact of meningitis, and provide detailed information and support.
Membership and support

The MRF Membership and Support team are here for you for any questions you might have about meningitis and septicaemia and their effects on you, or your family and friends.

Tel: Helpline UK 080 8800 3344 Ireland 1800 41 33 44