Hi all. I have been reading a couple of pages of this forum but have not found anyone with the same story as mine. So my question is: do I have moyamoya!

I have the diagnosis, but I myself am in doubt. I had a stroke 7 years ago which partly paralysed my right side. I have recovered almost 100%, just some very minor weaknesses in my right arm and hand.

When I got the diagnosis I was told that surgery was certain, but since then they changed their mind, and say that my condition is stable, and I will probably not need surgery. I see a neurologist annually and also get a CT scan and ultrasound annually.

My thinking is that it might be something else, as almost everybody I hear about, the disease is progressive. If mine has been stable for 5-7years without surgery can it still be moyamoya? I haven't had any symptoms since the stroke 7years ago.

Any thoughts appreciated  :)

Moya-Moya is different for everyone and in some people it can be more progressive than others.  I don't have Moya-Moya but my daughter does.  She had just turned 2 when she had 2 strokes and was diagnosed and that was 4 years ago. She has been monitored through MRI's and still takes aspirin.  For her the Moya-Moya has progressed but in a small amount but it is not a significant change.  She has not had the surgery for a few reasons.  One that she is doing so well and the right know the aspirin is working. 

Have you ever thought about getting a second opinion. You can either use another doctor in the area where you live.  I also know that Dr. Steinberg at Stanford is one of the leading doctor's in Moya-Moya and will review patients files. 

you can send your MRI reports to Dr. Smith at Children's hopsital or Dr. Gary Steinberg , at Stanford hospital.  and have them look at your MRI  (latest) .. they should be able to confirm if it is moyamoya or not..

Good luck..

It would be interesting to know how old you are.

But if you have NOT had ANY symptoms whatsoever for seven years than chances that you have Moyamoya are almost minimal.