Anyone else suffer from Mollaret's meningitis?

[OfAllTheLuck]

Thank you for taking a moment to read this post.

I've been living with MM for at least 6 years. For the past 3 years I have been under the care of a neurologist and an infectious disease specialist for one year. Their opinions on MM conflict at times, leaving me confused.

I have had five episodes of MM, four of thoss serious enough to need a stay in the hospital.

I now struggle with constant fatigue, disequilibrium, muscle spasms, intermittent bad headaches, occasional insomnia, numbness and tingling in my leg/s and face.

Most days it takes all my strength to get through my long stressful workday.

If you have been professionally diagnosed with MM, do you have similar symptoms? If so, how do you cope/manage?

[Amrita-A]

Hello,

I'm sorry for what you've been through. I have had meningitis once, in June of this year, but I still feel terrible a lot of the time. I would not be surprised if I end up with MM. I have a question. Do you get a fever with it each time? How do you know it is a new episode and not a continuation?

Do you know which virus caused it?

I hope you feel better and make a full recovery.

Amrita

[OfAllTheLuck in reply to Amrita-A]

Hi Amrita,

Thank you for the reply and for the well wishes. I usually run a high fever (38.3°C to 39.4°C) for a few days during each episode of MM. As for determining new episode vs a continuation, I guess I determine if I feel better (no more fever, debilitating headaches infrequent, appetitte and energy return) then the episode is over.

I've had my CFS tested with each episode of VM, but the identity of the virus remains unknown.

I hope you don't have MM. Hang in there. VM can take weeks to months for recovery.

OfAllTheLuck

[Amrita-A in reply to OfAllTheLuck]

Thank you for your reply. I wish you the best of luck. I hope you don't have to have any more lumbar punctures.

Amrita

[Jonad724]

Hi :-). I was diagnosed with MM in 2010 and through a process of keeping a diary of my day I managed to work out that the recurrent attacks were caused by stress. Having MM can be a lonely experience as it is very rare but fortunately there is the Mollarets Meningitis Association Facebook group where you can share your experiences and learn how others cope after being diagnosed. As it is so rare my GP told me that I couldn't possibly have it so I'm not surprised that you're getting conflicting messages from doctors. The simple fact is the medical profession understands a small fraction of how the brain works and the rest is educated guesswork. You can find the MMA on Facebook here: facebook.com/mollarets and also at their website mollaretsmeningitis.org/

You are not alone! Take care, Jonathan

[OfAllTheLuck in reply to Jonad724]

Thank you!

[Starry]

Hello,

I had vm 13 months ago.Ive recently had one episode which might be a recurrence but have all of your symptoms except spasms and am not able to work more than part time.

Thinking of you. I recently came off pregabalin and now wonder if it was having a protective effect. Only time will tell. Whatever my episode was like Jonad stress was definitely the trigger.

[OfAllTheLuck in reply to Starry]

Thank you for the reply, Starry. I wish I could work part time, as it would reduce stress, but doing so would result in a loss of my health insurance. I'll find a way to manage.