Hi Everyone,
Again thanks for the amazing mtg in SA a few weeks ago!  It was truly a beautiful thing to see MM survivors and their families!  After receiving an e-mail from Dr. Steinberg's RN, he basically said because of family history and medical history I should have an MRA done.  I meet with a Neurologist on 6/28 at 1pm.  Any advice on what I should ask him?  It is so hard because when you call to make the appointment I had to call 5 offices before one would say okay I'll see you and what are the chances he understands what I am really wanting!  I just want to make sure it was not passed down to me and not have that fear in the back of my mind any more!  I am pretty much going to tell him my Mother's history and her Mother's history and go from there.  It is different becasue my Mother's situation was discovered after her aneurysm and my scenario is different.  I will keep everyone posted on how the consultation goes.

Angela,
I think you should start with a one sentence description of what you want from the visit. Then ask if the Dr. is familiar with Moya Moya. If he isn't, the conversation is basically over. Because this is a rare disease, there are few definitive answers to most questions. So we must rely on the best experiences of professionals and people who have experienced this disease first hand. Keep in mind that much of what your research uncovers is not statiscally valid and is mostly anecdotal. A Dr. with no experience will not have much to add. Are you experiencing any symptoms? If you are, you may want to seek a Moya Moya specialist. You can find one on this website.  Hope all goes well for you.

Russ