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.