Posted by Marlene on September 01, 2003 at 09:33:33:
In Reply to: Help, I think my daughter has this posted by Kathy on August 31, 2003 at 17:47:02:
I'm so sorry to hear that your daughter has been so sick. It's scary to watch a loved one go through what you've described and not know what's going on. We've all been there. I've learnt through it all, to learn all you can about Moyamoya and ask a lot of questions and make sure you get answers. The trouble with Moyamoya is it is a rare condition and I was shocked at how little doctors and even Neurologists knew about it. The real answers comes from experienced experts with this disease. If you're in doubt, do not hesitate to send CT or MRI films to an expert and get a second opinion. It scares me to think where my niece would be right now if it hadn't been for her parents seeking a second opinion from Dr. Steinberg.(An expert on Moyamoya) Time is very important! DJ has all the info you'll need to learn more about Moyamoya here on the medical information link on this web site and the names of the experts that would look at your films with a second opinion. Like I said before, read and learn all you can, it will help you and your daughter and if you think she has moyamoya, seek a second opinion with an expert on this disease!
Good luck Kathy. You'll be in our prayers. Please keep us updated.
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