Hi everyone. 

I was just diagnosed this past Friday March 9th.  I'm still kind of adjusting to the idea that this is going on.

I was wondering if anyone knew of a good doctor in the Philly area or DC (I have family there too) or even New York if need be that knows something about this.

For anyone who is familiar with the area, my primary doctor is part of the Cooper University Hospital.  She is the one who told me about this after an MRI and a CT.  She made it sound like it wasn't a huge deal.  Just the possibility of stroke.  You know.   :-/

I just called to make the appointment for Cooper Neurology  and they didn't even know what I was talking about, which I know is the front office issue and not necessarily reflective of an actual doctor's knowledge, but I guess I didn't sound urgent enough.  The first available appointment they could give me was June 20th.  That's 3 months away!

I've been going to the doctor because I have terrible migraine like headaches and my vision is starting to get really blurry in my left eye.  To me, this is a problem.  Today, I am on day 3 of a ridiculous headache that just will not go away.  The doctor told me that she didn't think the Moyamoya had anything to do with headaches, but from what I have read so far, it sounds like headaches can be a big part of it. 

Any suggestions on where to go from here?  I'm nervous.  Not necessarily scared, but nervous.  I would like to have some answers sooner rather than later.

HI-June 20th is definitely too long to wait.  Three months is a long time to take the risk of having a stroke.  Did they at least put you on baby aspirin for now?  Also, headaches can be related to MM.  I have no knowledge of doctors in that part of the country, but I'd keep searching or at least try to get in a lot sooner.
Good Luck

The doctor did mention taking aspirin but told me to wait until she talked to a neurologist herself to find out what kind of dosage.  But again, I still haven't heard anything else from her. 

Meanwhile, I sent my information over to Jefferson Hospital in Philadelphia.  I read some more posts on here even though they were a little older and looked online and they seem to have doctors that are aware of this.  And also, DJ had posted a link for a place in Manhasset, NY.  That's only a couple of hours away and they said that they have openings before June so I am going to see what date they give me and go from there.

Thank you though.  And good luck to your daughter.  I have read some of your other posts.  I played flute as well when I was younger.  It always made me feel very lightheaded too, but I never actually fainted.  My doctor always just told me that I had respiratory problems though never actually diagnosed me with anything.  Makes me wonder since I just found out that I had this how much unexplained medical mysteries I had growing up may have been related to this and just no one knew.

Glad you get to see someone before June!
Lots of little things with my daughter that now I think - that was a sign I should have paid more attention too - like hand numbness, tripping over nothing, fatigue.  Hind sight is 20/20 though!
Good luck with the new doctors and getting in soon!
Jody