Viral Meningitis Week 5th – 11th May

[MNClaireD]

Following last year’s success, we will be holding our second viral meningitis awareness week in May. We want viral meningitis to be taken seriously; highlighting the problems many of you have experienced following this disease.

This is where we need your help! We want your suggestions and thoughts on what you would like to see included during this week. Please let us know by replying to this post or by sending an email to [e-mail]

Looking forward to your suggestions. Over to you…..

[Katkinson]

Headaches, dizziness, memory lapses, chronic fatigue, poor immunity and susceptible to water infections, and having to give up an active job I loved. This had an impact on my mental health, ie causing depression. I had meningitis in October 2011 and I'm still suffering many after affects.

Also, I found physio on my back incredible. Apparently being immobile for so long after the illness compromised nerves in my spine. This contributed to my symptoms. Following the physiotherapy I felt great. Anyone in my area-Durham I can highly recommend THe old Pit Practice in Pity Me. Kevin Reese was wonderful and specialises in neuro physio. The recovery certainly doesn't seem to be a speedy one, accepting this, may also help mentally.

[Jonad724]

I think it would be useful to target the medical profession and in particular GPs and A&E doctors. I know, because I've asked, that trainee doctors are told that VM is akin to flu and doesn't have any long lasting side effects. I even have to force my GP to admit be didn't know anything about VM when I had it and wouldn't sign me off work even though I could barely walk. The diagnosis of Mollaret's, although I was pretty sure I had it, took too long and the treatments for VM and Mollaret's are just not good enough. I was discharged after two nights in hospital with the doctor telling my wife that all types of recovery from meningitis are the same and VM is always mild and I would be much better in a week. The fact that I has almost died two nights before didn't seem to raise any concerns. That I was rushed back in three days later no with no discernible blood pressure and no means of being injected with anything should have been the hint but no I was sent home after 6 hours in the assessment ward. 12 years on and I still have side effects and of course Mollaret's.

[MNClaireD Partner Meningitis Now]

Thanks for the feedback so far, this will be passed on to the team working on our awareness week.

Do keep the suggestions coming...

[Missy2012]

Its important for GPs, general public and vm sufferers to understand after effects. It's so hard when you're trying to explain to people (ie Drs, family, friends, etc) some of your symptoms; they think it's all in your head. They keep telling you vm is just like the flu. You'll feel very bad for a couple of days but will be back to normal in a couple of days. Please include light sensitivity (months or years after vm). Wearing sunglasses on rainy/cloudy days is not just for kicks. The physical after effects are important but just as important are the mental after effects (memory, mood swings, anxiety, depression, concentration, personality changes). Thanks

[Loftus]

Thank you for highlighting VM. I feel not only should GPs know the possible post VM symptoms but also the probability of VM being a possible diagnosis. I had two GP appointments spaced a few weeks apart and two different GPs. Both dismissed my mild protests that I didn't feel my symptoms were true of 'simply' stress related. On the second visit I was told it could also be just a virus and I'd get over it. My central vision deteriorated. I attended the hospital eye dept and even the nurse manager was abrupt and dismissive, then, my optic discs were seen to be swollen and the lumbar puncture(later) proved at last that I was genuine ! Today I had a follow up with a Neoro-Ophthalmologist. I expressed how I felt I should be 'over it by now'. PLEASE everyone(especially GP's) take note of what he said to me - 'You have had a serious, sever and debilitating illness and it will take longer to recover than you have probably hoped'. Can some swelling of the optic discs be identified using an ophthalmoscope? If so- perhaps GPs could be encouraged to use them !

For all those who like me had a dreadful antibiotic adverse reaction - your poor immune system will take lots of time and TLC to recover!

[chrisdunn]

All the above. The effects of this disease cannot be underestimated, over two years ago and still daily reminders. memory problem, falling asleep in front of the telly, mood swings, anger, depression. It is a VERY SCARY place to be at times.

[Sandy2]

I agree with all those who posted above. I was a healthy and fit 59 year old. After 3 ER visits and a 5 day hospital stay for "pneumonia" I was finally given a lumbar puncture which confirmed VM. I think that it wasn't done earlier because although my neck was sore it was not very stiff. The headache, uneasiness and intolerance to light, sound and movement were unbareable. I had a 5 day hospital stay.

My doctor was very caring and patient during my LONG recovery. I asked if she had had many meningitis patients and she said no. She gave me adequate perscriptions to keep the horrendous head pain bearable during the 2-3 months it was required. I was very weak and needed a walker for a couple of weeks. I would fatigue in body and in brain. I was easily overwhelmed with sound and conversation- to the point of tears and shaking. My short term memory was really affected, but slowly has returned; now 18 months later. All the while my doctor was open to my symptoms and encouraging that time will heal a lot.

This site also helped a lot. Although, I couldn't even read for about 4 months, but when I could, I found you all. That helped me know I was not alone! - and as importantly,

I was able to learn.