Recurrent Aseptic Meningitis

[Julie Parsons]

Hello!
I am always on the lookout for people who deal with recurrent viral meningitis. I think Mollerets is really close to what I have, some doctors have said yes that is it, and others are still baffled. I caught viral meningitis the first time in 1989. Since then I have suffered recurrent bouts. When I get sick with this.....I really get sick. The last time I had it I was on vacation. I ended up in the Hospital the whole time and then had to take 3 monthes off from work. To this day, I still feel effects of being sick with it. I have had it many times, and each time off to the hospital I go. I did go to Mayo clinic in Rochester MN and did see an infectious disease doctor and their headache specialy group. It seems my meneingitis is linked to my chronic migraines. Keeping the migraines in check keep the meningitis in check. They have never found any viral reason. Nothing was found in repeated blood tests, blood serum tests, lumbar punctures, brain scans, spinal scans, nerve blocks, many doctors, Nuero's. UGH! So for all those who have this darn recurrent Meningits with no viral cause, please post. I would love to hear what has helped you.

Julie

[marysquirrel2001]

Hi there,
I have been diagnosed with Mollaret's meningitis a few years ago. I have had aseptic viral meningitis 9 times now, every time confirmed with a spinal tap and hospitalized for 5-7 days. Then it usually takes about 6-8 weeks for me to get back to normal. I was first diagnosed in 1999 and after the first diagnosis it was about 2 years until my next episode. Then it was almost 3 1/2 years til the next. However after that the episodes started coming quicker, 9 months apart, a year apart. Sometimes twice in a year. I can tell you the moment I get the disease. I have the same initial symptoms every time. I have seen teams of infectious disease doctors, neurologists, immunologists, and no one can explain this to me or my family. I feel like I lose a part of myself every time I get it. The pain is so extreme that this last time in the hospital it took almost 2 days to get the pain under control. I thought about investigating the Mayo clinic to find out if they have anyone that is intrested in studying recurrent viral meningitis, but from your post it seems that they couldn't do anything for you other than what my team of doctors here at OSU has done for me. I was also thinking the Cleveland Clinic but haven't made it that far yet as I am still recovering and just don't have the energy yet with going to work and all. It is so nice to find someone else out there though with the same disease.

[kmac4050]

I just went through my 20th episode of meningitis in 10 years. I am a teacher and was out for spring break, bam it hit the night break was to begin. I think that mine is a mold allergy. When I get in an enviroment that has mold, my throat closes and within a few days I get sick. This time I had a cycle of steroids to get me through it, I did not want to be in the hospital for break, although I know I need to document every time I get it, the recovery is so long, most sites say you are back to normal in 4-7 days. This has never been the cases. It takes much longer as most have already pointed out.

[rando6246]

Well, I thought it strange to have more than once. I have only had it four times in 20 years. The first time I was diagnosed with migraines, the second time also and then went back a second time and that is when they did spinal tap to find viral meningitis. The third time I was bitten by a bat and contracted viral Menigitis 2 weeks later. Just in May of this year I got it again, now that I am 46 years old it took a bit longer to recover. I was in the hospital for a week and out of work for three. It hit me pretty hard this time, nothing would take away the pain,could not eat or sleep and could barely walk, I had memory loss and still am a bit jumbled at times,not sure if related or just getting old. Now that I know what it is ... I pretty much diagnose myself when I get to the emergency room. Nothing they can do about it, just give pain meds and rest and pray it goes away soon. I don't know how we get it, but after this last time I don't ever want to have again.

[EMA]

This is my first time to post...

I am trying to get over my 9th case of viral meningitis. This has been going on since Oct of 2008. Stories are all sort of similar although I have had some very strange illnesses with it along the way. I, too, take months to get back and I truly don't think I ever get back to what I was. I am a 41 year old mom of 3 and my life has been taken from me over the last almost 4 years. I have been on steroids nonstop for almost 3 years and whenever I wean down the meningitis comes back. Right now I am on 80 mg of pred. I, too. have done Mayo Clinic (not a fan). I made 6 trips and I am in Louisiana so that was not an easy thing to do. They had no answers they just put me on 1000 mg iv steroids a week for 6 months. EEK! I tried all the immune suppressants, ivig, etc to no avail. I'm ok with no answers...just make it stop. I've tried Baylor in Dallas etc. NOW...in Nov of 2011 my blood work began to be off. I have gone into bone marrow failure and the doctors have no idea why. I am not on and have not been on immune suppressants since last summer but did the drugs do it? All the steroids? Of has the immune system turned on my bone marrow? We don't even know if this is from my immune system. I am constantly getting blood transfusions etc. So, this last episode of meningitis, we guessed it was meningitis, bc frankly, to all of you, if you've had it, you know what it feels like....they could not spinal tap me this time bc my blood work was so low. (They had to even treat it this time like it was bacterial bc I had such high fever etc so they wallopped me with antibiotics this time too) My red, white and platelet count was so low I almost died with this one. I am not sure I can make it through another...That happened May 13th (yes, Mothers Day) and I am slowly trying to make my way back from this one. I am still here and my doctors have been amazing trying to find a place for me in the country to go to keep fighting this. There has to be an answer for whatever the hell this is. Somedays I think I am crazy and this nightmare will end...Thank God I was able to get a blood transfusion yesterday...would just like the headaches to go away...I can't remember a damn thing! My poor friends and family...dealing with me is like I'm 90! I didn't go into everything bc some of y'all have said some of the same things I have had...eek...except the bat. Yikes... I'm not around those too often...even in Louisiana. Sounds awful. Julie, I bet we saw the same drs in Rochester...I went through all of them...Infectious, Pain management, neuro, neuroimmunology etc etc.. They told me they had seen one other case like mine....maybe it was you. This was 2008-2010. This was before all the blood work stuff started. I quit going...I hated it. Emily

[marysquirrel2001]

Well all,
I posted up a few and I have now passed my 13th episode. I see a Dr. at the Spine Care Center at OSU and am sort of surprised by those of you who are given steriods because my Spine Dr. said that he could no longer give me steriods or his collegues would question if he was crazy due to the fact that the steriods make your immunity go down and after my 2nd round of shots, i got my 12th episode of menigitis. He said that it most likley was caused because my immunity was too low from the steriod and caused the episode. Now he sees me on a regular basis, not much he does for me, but he manages my pain. I have constant pain on my spine, almost like a blow torch is on it constantly. My neurologist here at OSU put me on valtrex (since the 2nd time I had menigitis it came back with herpes symplex in my tap) during last december's episode and wanted me to take 1 gram a day to keep it at bay. I totally thought I was having another episode in August this year and when I went to the hospital with all my normal symptoms my tap came back negative. My neurologist thinks it was because of the Valtrex. He said I probably was starting to have the episode but then with the meds it helped keep it low. I don't know. IT is so frustrating. Especially when I need to travel up to family and hurt even more after every trip. I was going to see another immunologist here in Columbus since the last time was almost 7 years ago. Wanted to see if something changed on that front, since I get sick any time someone around me gets sick. Does any one else have that problem???