Autoimmune meningitis

[Taiga]

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!

[jenny2448]

I recently went to my rhuematologist and he is a professor and he really explained it well to my husband but I cant explain it as my I cant take everything in at the present time. Have you got a really good rheumatologist to see? I am in Australia unfortunately.

[Taiga in reply to jenny2448]

Thank you so much for your answer! It feels better just hearing that I'm not alone living with this condition. Would you like to tell me more about your case? Maybe we share the same symptoms. How has the course of your disease been? And when did you get the right diagnosis? What treatment did you recieve? Did it make you any better and are you experiencing permanent damage?

My reumatologist is also a professor but, he tells me, because it's such a rare condition he doesn't have much information for me and it's a hassle only getting an appointment. Maybe there is a doctor somewhere on the planet who has special interest in these cases? Even if it's unusual there has to be atleast a handful of cases internationally? I was thinking that gathering these case descriptions might shed some light and make the physical debilities mentally more bearable, a tiny bit easier to cope with. I suppose I will never be able to grasp this condition theoretically because people seldom put money and interest in research about such narrow fields and also I guess the material is to sparse to make something out of it.

[Lippistix]

Please give my 28 year old daughter's story a read on this site. Rosie S's Story. Here lies sugnificant success (from what we know so far), for complete recovery from viral meningitis.

She suffered for near on two years before discovering meningitis now, subsequently trying cranial massage by visiting an independant cranial osteopath in her area.

Some symptoms you are experiencing are pretty much similar to what she suffered. It seems the key, and recent breakthrough, is releasing the spinal fluid which VM leaves a blockage for...and enabling it to flow again through your body, particularly your head.

There are some on this sight who have now given it a go after reading about it, and after just a couple of sessions, felt considerable relief.

In the last few weeks Rosie and I have been contacted by the media, news papers and radio to tell our story of this potential breakthrough!

We now feel we want to help as many poor people who have suffered this dreadful illness for which before now seemed there was no light at the end of the tunnel.

Good luck and please keep posted how you get on if you try this amazing treatment. Rosie coupled this with acupuncture, having alternate treatments once a week, now a couple of months in.

[Sjogren]

Hey ,

I am Chaja from Amsterdam Holland , i also have chronic Meningitis cause off Sjogren. I am following Your question 🤯😳

[Taiga in reply to Sjogren]

Hello Chaja! Thank you for your reply! It kind of made my day. Would you like to tell me your story? Maybe we can learn more about our sickness exchanging stories and information? I never met, or heard, of anyone with the same as me, i. e. autoimmune meningitis due to Sjögrens. I'd love it if you'd send me a message!

[Seulhe]

Hello, I feel very surprised when I read your message. AT FIRST, I had a symptom on my ear, I hear heart beat sound. and so much headache. First, my ENT doctor perscribed antibiotic for ear. But the symptom didn't go away and got worse. I had double vision. So I went to emergency and finally I had to finish up with meningitis surgery and ear tube surgery. Double vision is gone, and I received 2 month antibiotic like vancomicine and also steroid treatment. I was okay with few monthes, but I have new symtom like cannot keep on balance, vomiting and another headache. Now, I am in Korea and I got all the test here and my final symptom is Autoimmune meningitis. I am getting ritoximob and cyclophosphamide monthly and getting better significantly. I was taking MRI very often and it got better, worse.... but this time is getting better. I have to continue this treatment in Miami FL. I am discussing this with my ENT and nurlogy, but I am just wondering where did you get ritoximob treatmen from? Which doctor should I see for? Nurlogy or rheumatologist???

[Taiga in reply to Seulhe]

They should look for antibodies for different autoimmune diseases. I guess they already have? But if they haven't found a match they should continue with a wider search until they finally find something. Haven't they told you the cause or haven't they found it yet? I guess they might be able to rule some things out if you are getting better on rituximab. I guess if you don't know what the root of your condition is you should consult a neurology doctor, because meningitis is a neurological symptom. They should then try to find what disease is causing the meningitis and then you know what doctor to continue with. Maybe a autoimmune neurological disease is causing your meningitis. In my case I started getting IvIg at the neurologist. Then when I got my Sjögren' diagnosis I got transferred to the reumatologist where I started to get rituximab, plaquenil and steroids. But I had to fight to get them to keep investigating or else the doctors tended to just give up, saying "I don't know what's wrong" or not even saying anything at all. Horrible. Anyway, all of my best wishes to you and keep me posted about your case!

[RosyLenz]

Hi I think I am having autoimmune meningitis. I feel the same neck pain and headaches i had before. When i get out of bed my spine hurts so bad im crying. I cant straighten up easily. Once im up walking around i feel better. But if i sit i feel sick nauseas bad headache like ive been beaten in the head. My blood pressure is up tpp and im having hot flashes. Prednisone makes it go away til it wears off. Antibiotics and vicodin make it worse i think its the tylenol. I dont know if this is the same as autoimmune encephalopathy. Im having myoclonal jerking too. This all startex when they found a hemangioma in my neck. Any thought would be welcome. My TPO antibodies are high now. But I feel sick like with meningitis. Thanks in advance.