Does anyone have chronic autoimmune meningitis as part of their MS?

[Cookie_Crumbles]

Does it respond to MS treatments? Did it ever go away on its own? How do you deal with the disease - and with the doctors?

Mine started a few years ago as an accute attack. Back of the neck stiff as a board, terrifying pain in head and neck, unreal sensitivity to light and sound, vomiting... the whole nine yards. The doctors weren't impressed when I told them about it (and I couldn't get to the doctor while it was lasting. I'm so used to truly terrible migraines, I wouldn't think calling an ambulance for something strangely similar.) So in a couple of years, a few more attacks, and during the last year they turned into daily occurrence. For weeks and months.

The previous doctor prescribed steroids for that, but I moved and I can't visit him. The current doctor listened and advised me to sign up into a psychosomatic clinic... I don't know what to do when I run out of my last supplies of meds.

Any stories? Happy endings?

Thanks in advance!

[Pistachio]

I'm going to go out on a limb here and ask you a question and hope I don't get flamed by anyone for asking.....

Have you ever been tested for Lyme? I have both Lyme and MS. What you describe with the neck and head pain is spot-on what Lyme feels like. It causes severe stiffness in the neck and shoulders and that, in turn, causes severe headaches. And, Lyme is a relapsing disease, as well. You will get this stiffness and severe headaches and then they will disappear only to return again a few weeks, or months later. And, to complicate matters, Lyme can be neuro - neuroborreliosis. It can also leave lesions on the brain.

Also, it makes me angry that they seem to think it's all in your head with the. "psychosomatic clinic" recommendation. That is terribly ignorant and dismissive of doctors. Please do not allow them to treat you this way. Just because THEY don't have the answers does NOT mean the problem is not real. How arrogant!

[palmtree]

That doctor who told you to go to a psychosomatic clinic infuriates me. He has no right to do that. It reminds of the 19th century when they thought women’s heath problems were just hysteria. Can you sue that doctor?

I agree that this could be Lyme but it sounds like the difficulty finding decent health care is impeding everything. I wish there was something I could do to help. The US has the same problem. I moved to a pretty rural town and getting medical care here has been next to impossible.

I hope you can find some answers soon.

[Cookie_Crumbles]

Sorry it took me so long to answer. Just had another strong attack and was wiped out of life for a few days. :-( Usually it's constant mild to medium, but sometimes it spikes into a real storm.

Have you ever been tested for Lyme?

Now Lyme disease has never even occurred to me! Wow, I had no idea. I think I have been tested a long while ago, like 5-6 years. I have to dig in my papers to see if it's been done then. And in about 2010 I got the first vaccination against tick bite stuff, but I never got the second one. I'll have to follow through and ask for a test! Thank you so much for suggesting it!

That doctor who told you to go to a psychosomatic clinic infuriates me.

As for psychosomatic stuff, I have no way to describe how it makes me mad! And "good medical care" is probably out of the question for me now. I think in local circles, once I've been labeled "psychosomatic" and it's been put in my papers, there's no removing it unless somehting truly drastic happens. I think I'll start a new topic just about that.