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.