I really wasn't worried until I read new post in the Guest Book. "Rachel" was a young girl who posted her story. The first sign of her moyamoya was numbness in two fingers. It really hit me because just a couple of weeks ago my oldest daughter(she's 23) showed me her pinky and ring finger, they were both white and numb they had been numb for a while and it's not the first time. In the past she had complained about her toes getting numb when she was exercising.(we've blamed it on her sneakers)  I know it's very rare to see MM in  2 people in the family so I'm not sure if I should  just watch her or should I be worried. I don't want to get her nervouse for no reason. She's in her first year of law school right now and very stressed. I haven't seen any other things that would point to MM at all, no headaches.  Does anyone else remember their first signs being  this vague? If so how did it progress? Kathleen's first signs were more severe and easily seen as a problem.KWIM?
Mary Grace

Mary,

I think it's good that you're asking about this, as the answer may surprise you. The numbers I hear thrown around at Stanford are that they see about a 7 - 10% incidence of moyamoya being in families.  Your daughter having possible symptoms shouldn't be a "drop everything and get to the doctor" situation, but certainly something not to be overlooked, either.  If you remain concerned, I think any doctor knowledgeable about MM would recommend a screening MRI/MRA, but most won't recommend invasive testing for symptoms as mild as hers.  They may be simply a result of "life stress", given her efforts with law school, but not something you should ignore.

I can only imagine how your heart dropped when she spoke of numbness.  Ugh.  Please keep us posted!

[smiley=hug.gif] Jill 

Numbness and/or paralysis after hyperventilation is a specific symptom of MM. My daughter and I both experienced this. We both have MM. Ours was not so "vague" however. She could not stand on one leg and I would go completely limp on the left side but it happened for the both of us after hyperventilating. eg. playing the clarinet or blowing up a balloon. Hope this helps and I wish you the best.
Russ

Hi Mary,
My initial symptom was a numbness and tingling sensation in the thumb and forefinger of my left hand. It didn't happen often, maybe a few times over a period of several years - easily ignored or attributed to a pinched nerve. Just prior to my diagnosis the fingers acted up a bit more frequently until the evening when those fingers and my left upper lip were numb simultaneously. I found later that I'd had two very small strokes. I still feel the weakness in that hand when I'm overly tired or stressed.

I had severe headaches when in elementary school, but none during the next forty some years and none since my MM surgeries. It seems there's a pretty broad spectrum of symptoms associated with MM.

I think Jill's advice to you was spot on. It may very well be nothing and your daughter is fine, but I'd check it out. If nothing else the MRI/MRA would serve to reduce your stress and worry as well as your daughter's.
Best wishes,
Kim