Just wondering if anyone has this condition.
I do & seem to be very much alone. I know there are others out there but I've yet to meet one!
It's a uveomeningeal condition which affects nearly everything, when active.
It sure would be nice to talk to others stuck with this crappy thing.
Also, I'd be delighted to offer support & advice to anyone newly diagnosed.
It's a very scary disease.
I wish I'd had access to something like this site when I was just starting out.
Hope this gets a response....

Welcome Cookie60.

Someone will be along to help.

Hello Cookie,
Welcome to the NeuroTalk Support Groups.

I just wanted to suggest that you may want to also post on
Autoimmune Diseases Forum
as well as here.

I shall definitely do this.
I'm a Kiwi, by the way, but I live in Canada.
Thanks a bunch

Kia Ora, Cookie.

Your condition seems incredibly rare.
I hope you're getting good medical care.

p.s. By the way, there are older posts on these forums for some of the symptoms that you may have.
e.g. uveitis, but I didn't find any for VKH syndrome though.
NeuroTalk Forum Search

Unfortunately it is an weird condition but I did hope there may be some one else struggling along.
I've recently 'lost' my Ophthalmologist; he returned to NZ after many years in Canada. I have yet to see his successor & am a little bit nervous as so many Ophth's have never come across it & don't know what to do. I'm hoping he will listen because after 26 years, I do know what works for me. I can't afford to lose any more sight or hearing while they dither about.
I will write in the Autoimmune section..it does fall in to the category as well.
Thank you again.
Cookie