Guest guest Posted January 10, 2004 Report Share Posted January 10, 2004 wrote: Can anything this weird happen? ~ , Yes. My dad's family is the one that has it, and the geneticist thinks my mother's side have it too. As far as types, I was diagnosed in 1980 and have yet to be classified into any certain type, because I don't neatly fall into one predominately. And besides that, I have had multiple nerve entrapments, which aren't in any known classification. But there is a whole big group of us out there with EDS that also have them. In '80 I was the only person known to have EDS of this kind-but now with computers a very large group of us are known about. Just no type to go into-yet. How was the genetic exam? CindyH PS Still trying to figure out why we sound so familiar to each other. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2004 Report Share Posted January 10, 2004 Cindy H. The genetics exam went well. They are so very nice at NIH. They just aren't sure which category I fall into because there is so much stuff gong on with my body that I can overlap into the ones they narrowed it down to. 1,2,4,6,7. I have severe axillary nerve damage to my right shoulder, why I don't know. They haven't called it entrapment yet. I've searched with my Mom's remaining relatives to track this down, but there's no one to contact about my Dad's side. So where may we have met? I'm still thinking. Sincerely, S. Re: NIH- S wrote: Can anything this weird happen? ~ , Yes. My dad's family is the one that has it, and the geneticist thinks my mother's side have it too. As far as types, I was diagnosed in 1980 and have yet to be classified into any certain type, because I don't neatly fall into one predominately. And besides that, I have had multiple nerve entrapments, which aren't in any known classification. But there is a whole big group of us out there with EDS that also have them. In '80 I was the only person known to have EDS of this kind-but now with computers a very large group of us are known about. Just no type to go into-yet. How was the genetic exam? CindyH PS Still trying to figure out why we sound so familiar to each other. Quote Link to comment Share on other sites More sharing options...
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