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Posted by Marlene on October 27, 2003 at 09:57:16:

In Reply to: Symptoms posted by Sharon Nakama on October 27, 2003 at 08:22:49:

Hi Sharon,

My neice, Mandy has moyamoya. Last November this time she seemed symptom free as well. Then, out of the blue one day she said, that she could not hold a pen to sign something. Her fingers and hand were bothering her as well. The following month she had several major strokes. It's different for each person, but never the less, it's WARNINGS! The blood is not getting to the brain properly. Please do not hesitate to see a moyamoya specialist immediately and get some answers from one that knows the disease and how to handle your individual case. Waiting is dangerous. Thank God there is something that can be done, with the right doctor. The reason I say the right doctor is, I believe that if we listened to the neurologists here where we live in Philly, and waited, I don't think we would have our Mandy to this day. I was shocked to learn how little most neurologists know about this disease. A second opinion is always the best bet. DJ has info for the help you'll need right here on this website. DJ's doctor and Mandy's was, Dr. Steinberg. An expert on this disease and thank God they are both doing great now.

Good luck! You'll be in my prayers.


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