Hi everyone! About a month ago, I've been diagnosed with moya moya. Like any of you know, it is hard to deal with. I'm 39, leading my life, just bought a house and then BAM! you have a desease which is almost untreadable.... My doctors are saying that I'm functioning too good for now to have surgery already. But when you read that this thing is progressive, one can't help but thinking..."What the hell are they waiting for? To have a stroke that is too severe to get back healthy from?" Now next tuesday is my first check up and I'm going to ask them what they are gonna do about it. Because of MM being so rare, they haven't had much experience with this in Belgium. I sure hope they can come up with a solution on either getting an experienced surgeon over here or send me somwhere where I can get this done. I've had a spect scan three weeks ago and another one on january 2d. I guess they will put them next to each other to see how fast it's going. But something HAS to bed done. I can't just sit around and wait for something worse to happen. So if anyone knows someone in the Belgium area who knows more about this desease, please don't hesitate to inform me.

Thanks for this supportive and informative site!

Thanks DJ. I will be mentioning Dr Scott Thomas during my check up with my neurologist tomorrow and others. And if he is not willing to contact them,  I will ask to get all the results of my scans so I can contact these specialists myself. There is a University hospital here in Belgium in Leuven where they sent me for the nuclear scan because there was a doctor there who  had seen moyamoya before, but don't know wether he actually has performed surgery before. One is so completely baffled when you get the news that you just forget to aks these things.

Will keep you posted here.
Nancy

Sorry to hear that you have this disease too Astrea. When people come on this site, it's never a good thing, right? I'm glad though that you seem to be stable and have no symptoms. My problem is, I do have them. Sometimes, the surface of my face feels weird, actually, I just 'feel' it. One doesn't normally 'feel'' your face. Also I have numbness in my fingers, I can move them, but don't feel them. And sometimes I fell like all my blood is being pulled out of my head and then my arm and then I get these uncontrolable ticks in my hand and arm. All happens on lefthandside. So as you can imagine, I feel like this needs to be treated. I can contact the professor in Leuven on monday, is what he replied on my mail. He's probably on vacation now. I hope he'll contact Dr. Steinberg in Stanford (since that's where this prf worked for two years) and asks for his opinion.

I hope you are gonna be okay and yes, it's easy to say 'pick up your life', but we're the ones who have to do it, right? Good luck in the future, hope all will stay stable for you!