re: Molleret's meningitis

I am slowly figuring out that I probably have Molleret's meningitis. My physician and physician's assistant have not heard of it, so I'm doing my own research, and I'm not a novice. I have something of a background in medical research. I have two questions: a) does anyone know if there is any less-invasive way to get a confirmed diagnosis, besides a spinal tap? --- (I already know that I am a carrier of type 2 herpes simplex). Second question: has anyone made a connection between the occurrence of m.m. and immune sensitivity to certain foods, especially food additives like MSG? I recently have been doing an 'elimination diet', staying off of gluten, milk and processed foods. Then went to a Thai restaurant, and learned (after we ate) that it was full of MSG. Within 48 hours I developed pain in every joint, mild meningitis symptoms, dermatome pains, pressure in the eyes, major brain fog; could not put two sentences together. Actual herpes lesions are VERY rare for me, it's as if I can feel the virus moving in my spine: in the sacral area, the thoracic area, and the cervical neck area, and corresponding dermatome areas being effected. Any suggestions or help or similar stories would be great, thank you.

4 Replies

  • I think Jonad who blogs on here has Mollerets Meningitis. Look up his blogs and maybe sending him a personal message would be a helpful contact with someone who has similar condition. Best wishes

  • Thanks StrawberryCream, hope you're OK :-)

  • StrawberryCream is absolutely right, I was diagnosed with Mollaret's four years ago but I had the symptoms and attacks two or three years before that. It was a long slog to get the diagnosis and my doctor had never heard of it either, in fact he had never treated anyone with viral meningitis so it was a tough road. The good news is a lumbar puncture isn't part of the diagnosis because it would only show during an attack and even then my doctor wasn't sure it would then as no one really knows why Mollaret's occurs. My VM was triggered by Herpes Simplex but the chickenpox strain so I don't get lesions. I'm not entirely sure what triggers attacks but food does seem to be a element to it. Alcohol in particular is a pre-cursor to an attack and I have developed an intolerance to cocoa due to the bit of my brain which was affected by the attack. I have recognised the symptoms of an attack before it progresses, tingling lips, aching all over, sharp pain in the side of my head, bad disorientation, dizzyness, stiff neck, photophobia and cold extremities especially fingers and toes. I was never a big drinker, probably 1-2 units a week if that, so I know I wasn't just drunk! In the pre-Mollaret's stage of an attack a big dose of painkillers and heading to bed seems to stop it in its tracks principally because I am asleep, codeine based pain killers seem to work best for me because they make me go out like a light. The next day I feel very washed out if I have been able to catch the attack and generally have no memory of it, if I ignore the pre-attack symptoms then it progresses into a full scale attack and it is exactly like having meningitis again and this can go on for up to three days. Again I have to rely on what my family tell me as I don't remember it. Things I also recognise as triggers are mental tiredness. My job is pretty intensive and involves a lot of mental effort and if I don't watch the hours I work then I do get all the pre-attack symptoms. I know it isn't physical tiredness as I have done two half ironman triathlons with no attack following them plus all the training that goes with it. I think the elimination diet is worth doing as I did similar but kept a diary (I now use to track my diet as it helps with my exercise regime with the added bonus in that it tracks what I eat as well so I can trace attacks back to certain foods. Funnily enough when I mentioned to my doctor that I thought I had Mollaret's after he had Googled it he told me I couldn't have it as it was very rare. I have a lot of time for the medical profession (I deliver projects for the NHS) but boy can they say some really dumb things at times. Anyway please feel free to contact me directly via DM as I do know what you're going through. Jonathan

  • I also have MM so far there's vejen 5 attacks since 2007. I can't work anymore and I have several sideeffect

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