Hi! I'm new to this place but not to meningitis IRL. I've had it for years to and fro, a year ago I got to know that it's due to Sjogrens and after avaiting full effect of rituximab treatment (and plaquenil, prednisolone, IvIg and medication for Hashimoto's) they now think my symptoms are due to permanent damage to the meninges. They were also talking about adhesive arachnoiditis but my inflammation parameters are down after the rituximab so I suppose they ment damage - not ongoing inflammation. However, the reason I'm posting this is that I'm looking for info, other ppls experience etc. Anything! My doctors don't know much at all, are really fully booked and my brain doesn't let me read advanced scientific litterature anymore. I've been ill for many many years (15 and I'm only 34) and though comparing my recent state to when I was really bad is like night and day, I honestly don't think I can live longterm with not being able to have fun with my intellect (I can live with the headache though). This was my hobby and fuel in life and I'm prepared to travel far to see a specialist atleast for guidance and information although I suppose I probably will never get rid of the damage in my meninges and get a free brain again.
So, has anyone even heard of chronic autoimmune meningitis? Does anyone have any information to share? Do you know if the damage differ with the cause of the inflammation? I guess if there is no pathogen atleast one might count some things out although the immune response might be similar? Does anyone know? And does anyone know a really good and dedicated specialist who might be willing to look into my case? Thanks for your time!