Guest guest Posted March 11, 2004 Report Share Posted March 11, 2004 http://www3.ncbi.nlm.nih.gov/entrez/dispomim.cgi?id=225310 It does seem to be little out there about it. See if you read this one. Cindylouwho Type X?!? I was shocked that he said I had type X. Granted, he admited that he didn't know a lot about EDS, ... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2004 Report Share Posted March 11, 2004 http://www3.ncbi.nlm.nih.gov/entrez/dispomim.cgi?id=225310 It does seem to be little out there about it. See if you read this one. Cindylouwho Type X?!? I was shocked that he said I had type X. Granted, he admited that he didn't know a lot about EDS, ... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2004 Report Share Posted March 11, 2004 I read it and didn't understand a single word of it!! :-) > http://www3.ncbi.nlm.nih.gov/entrez/dispomim.cgi?id=225310 It does seem to be little out there about it. See if you read this one. Cindylouwho > ----- Original Message ----- > From: > I was shocked > that he said I had type X. Granted, he admited that he didn't know a > lot about EDS, ... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2004 Report Share Posted March 11, 2004 This is all I could find - hope it helps in some way. Love Lana TYPE X - FIBRONECTIN PLATELET DEFECT - Uncertain Soft, mildly extensible skin, mild joint hypermobility, bruising. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2004 Report Share Posted March 12, 2004 Cindy and Lana, This further suggests the dr mixed up the types in his head, because my major sign is hypermobility with less involvement in the skin. I feel that I bruise easily, but I actually only had 2 bruises at the time of the exam. I do have stretch marks, but I also don't know what distensae is. I don't really ahve a bleeding problem... sometimes it seems to take a while for a cut or scratch to stop bleeding, but not usually. He said something about classifying me as type X because of my mitral-valve prolapse (but from what I understand, that can be a factor in all or most types). I'll just hold out until I am referred to another specialist and discuss the diagnosis of my type with him. At least I now know for sure that I have some type of EDS and I'm not a hypochondriac like some people have suggested (and I can feel like an official member of the group now). ----------------------------- > Well, sounds to me like... There is a bleeding problem. The Petechiae are little red blood like spots that appear on the skin. Striae distensae, Striae are stretch marks, I don't know what distensae is. I read on another site that they have extremely soft skin, thin skin and very stretchy. I couldn't understand much of it either. Cindylouwho ----------------------------- > > TYPE X - FIBRONECTIN PLATELET DEFECT - Uncertain > > Soft, mildly extensible skin, mild joint hypermobility, bruising. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2004 Report Share Posted March 12, 2004 > I'll just > hold out until I am referred to another specialist and discuss the > diagnosis of my type with him. At least I now know for sure that I > have some type of EDS and I'm not a hypochondriac like some people > have suggested (and I can feel like an official member of the group > now). > That's definately what I suggest you SHOULD do! Keep us informed. Love Lana Quote Link to comment Share on other sites More sharing options...
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