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Jessie's story

29th January 2017

Dance student Jessie has been struck down by viral meningitis twice since first contracting it in April 2015. She has been told she has Mollaret’s Meningitis, a recurring form of the disease, and lives under the shadow of it returning. But she refuses to let the disease rule her life, as she recounts here

Jessie's story

“My first experience of viral meningitis was much more severe than the second. It happened in April 2015 when I was 19 and at Surrey University studying Dance.

“I saw a number of GPs prior to my admission to hospital who thought I had some kind of mild infection or sinusitis, so sent me home. My dad, knowing something wasn't right, came up and collected me from my university halls to take me home to Chepstow.

“By the time he arrived I had got progressively worse. I was very confused, wobbly, had vertigo and was vomiting. We drove home, which felt like a lifetime due to my agitation, and from that point until I awoke in A&E I can remember very little. I've been told that my temperature soared and an ambulance was called out to rush me to hospital.

“On arrival I was given antibiotics as a precaution and taken to acute A&E as bacterial meningitis was suspected. I had a lumbar puncture, a catheter inserted, various antivirals, sickness tablets and fluids. Following this I had a CT scan, MRI and was diagnosed with viral meningitis and early encephalitis.

Lost weight and very weak

“I had lost a lot of weight and was very weak. The doctors told me I would make a full recovery after a couple of months but to take it easy to begin with. I rested for a month before returning to university to complete my exams.

“Thinking I was fully better I jumped straight back into my busy and active lifestyle, which now looking back was probably a bad idea.

“Over the next year I was pretty healthy and active. I did find myself getting much more tired more quickly and my legs started to give me pain a lot of the time. As time went on this got worse and I saw the doctor about a number of possibilities, such as restless legs. I was working a lot on my feet so put it down to exhaustion.

“In July 2016 I suddenly fell unwell again with a bad headache. At the time I thought it could be sinusitis and saw my GP a couple of times. I would never have guessed I could get meningitis again.

Knew something wasn’t right

“The headache stayed for days on end and nothing would get rid of it. I knew then that something wasn't right but I still didn't suspect a repeat. My symptoms weren't as bad as before - it was just the headache that was agony. My dad came up again to see me and we stayed in contact with the NHS advisors on 111. One morning I began to vomit as my symptoms got worse and it was at this point we returned to A&E.

“My time in hospital was similar to before. I had a lumbar puncture, sickness tablets and antivirals, MRI and CT and I was diagnosed with another episode of viral meningitis. I couldn't believe it! I didn't know it was possible to have a repeat!

Told to google it!

“The consultant I saw was really intrigued by my leg pain. However, once they found the diagnosis the focus was on getting me well and out of hospital. Unfortunately, to my dismay, the consultant told me I had Mollaret's Meningitis, which meant it could occur again in the future. He told me to google it and left it at that.

“Luckily a doctor followed up with me and explained a little bit more. I was then discharged and sent home. I rested for a little while longer than my last episode of viral meningitis but unfortunately the leg pain I had experienced before returned. At present I am on amitriptyline for chronic nerve pain and am currently waiting for a neurologist appointment in a couple of weeks time to investigate further.

“My symptoms now include a weakness to hold and grip things; a tingly/numb pain in my outer arms, upper back, knees, back of lower legs and the top of my feet; sudden twitches or urge to move and spasms; pressure around my knee joint; an achy and restless leg; and I feel bruised. I’m extremely sensitive to touch to the point of pain.

“Normally I can only manage one big thing a day; otherwise I feel very weak and fatigued. However, luckily the pain varies and can be better on some days than others.

Thankful for the experience

“I am also thankful for the experience. It’s taught me a lot about life, how lucky I am and what to be grateful for. The time I took to recover shed light on the most important things in life. It made me a stronger and more appreciative person. I could not have done it without my Dad, who sat by my hospital bed every single day, and my supportive friends and family surrounding me.

“I would never ever wish this on anyone else and I’m curious to know how other people have dealt with the after-effects. That is why this charity is so, so important and I would love to help in anyway I can. It’s going to be hard to come to terms with not being able to dance as much as I used to, but I am still young and can built up my strength for the future. And, fingers crossed, prevent viral meningitis from presenting itself again."

UPDATE: As of October 2018 Jessie’s consultant now thinks the two episodes of meningitis may be unrelated and that she does not have Mollaret’s meningitis – a recurring form of meningitis. It is thought the first episode may have been undetected bacterial meningitis because Jessie was on antibiotics with sinusitis at the time. “This is all speculation”, Jessie added, “because we can’t go back in time, but it does highlight some of the difficulties with diagnosing meningitis.”