I have recently been diagnosed with MoyaMoya, I've had a ct angio, MRA and recent cerebral Angio, I'm 42 and scared....it all started 3 weeks ago when I had an episode where it felt like someone sucked the life out of my brain I couldn't move and couldn't speak maybe 30 secs, then it was over. We had just gone to bed, and I could hear my bf talking to me and saying stuff like "I know you couldn't of fallen asleep yet", I couldn't respond.  He wanted to call 911, but I wouldn't let him because I had not shaven my legs that day  I'm an ER nurse and although it may seem crazy to all of you, it was very logical to me.  Along with being the ER nurse I have ignored episodes of feeling really light headed, right hand and arm numbness, little things. 
The thing that sticks out from my angio gram, the neuro Radiologist said they don't do surgery until you have a stroke.....WHAT??????  I go talk to neuro surgery on Tuesday, I don't know what he's going to say, I'm still (kinda) young, lol and healthy why would they wait???  I have been so tired over last month, is this normal or even related?? Also have been having horrible right temple headaches......sorry I rambled, this is new and I am definitely not used to being on this side.   By the way I live in St Louis.  Do I go other places and get a second opinion?  I'm totally at a loss, I haven't really wrapped my head around all of this to be scared yet, I just know I don't feel good.  Thank God, I have a supportive BF and his family is amazing.

Welcome to the group, although I'm sorry for the new diagnosis knowing how scary it is. My daughter is 11 years post surgery. She was 5 at the time. The big problem I see with waiting(if that's what the Dr.'s tell you) is that no one can predict how fast this disease will progress to a stroke, and once you actually have a stroke you need to wait and recover to actually have surgery. Within a month of her diagnosis my daughter was having strokes very close together(even though her disease did not look to be at a seriousely progressed level) and by the time she had her surgery she was not in a very stable condition and suffered a severe stroke after the surgery. This stroke was life altering and I always share this knowledge with someone who is told to wait just so they can know all the possibilities hoping that they will get a second opinion from a MM specialists such as Dr. Steinburgh.  It is a very scary disease, uppredictable and progressive. Hopefully the Dr.'s ahve told you to stay hydrated, and keep from hyperventilating. These are 2 things we still make sure we monitor. Please keep us posted and be sure to ask anything that comes to mind. This group is full of very caring and knowledgable people.
Mary Grace

Hi Laura,
I am 42 years old and was diagnosed about 18 months ago after having a stroke. I have had one bypass on the right side and am waiting to have a surgery now on the left. You are doing the right thing going to Dr Steinberg you definitely need an expert opinion. I am in Australia btw. Prior to my surgery I was extremely tired but since am feeling a lot better. Stay positive and good luck you are welcome to personal message me
Cheers Maryanne

Email teresab@Stanford.edu.....she will tell you what to do....she is Dr. Steinberg's nurse.

Laura