So I live in southeasty alabama and have just found out i have MoyaMoya... i have been told since 2007 it was neurovasculitis but was misdiagnosed it seems.... luckily i have a good neuro in dothan huh! i am terrified and just starting to see doctors at the Mayo clinic in florida.... i am also doing research on this disease to see what i have to expect and what can be done, I would really appreciate any help or infor or just a friend with the same thing......

Hi there!

I am sorry to hear you have been diagnosed with this disease, but then again, you are lucky the finally found it! Can I ask what problems you were having?

I don't have much info for you since it is my son that has the disease and he is only 12. Treatment is different for children than adults. He was diagnosed last April after suffering a major stroke, had surgery in May, went through many complications but came through with flying colors! We just celebrated his 1 yr post surgery Anniversary! lol

You should move this post or make a new one in the Moyamoya Related Information and Support section, under Moyamoya Related Topics. you will receive many more responses and be able to get more information.

Good luck and
best wishes to you!