Guest guest Posted March 24, 2004 Report Share Posted March 24, 2004 Welcome to the list Liz. you will find a lot of information and help here on the list. I cannot help you with the uterine fibroid issue, but wanted to welcome you. Good Luck at the doctors. Hope you find the answer. Ginley Buffalo, NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2004 Report Share Posted March 25, 2004 Dear Liz, Welcome aboard! Feel free to " lurk " all you want :-) A few comments - you mentioned something about a dermatology appointment being some time off so you won't know what type EDS for a while. EDS is dx'd by a Geneticist. Check the articles under the Files section. There is a good one about the dx process called " EDS Diagnostic Explanation " . It is written in lay terms and is easy to understand. I recommend going to a Geneticist at the largest hospital you have access to - preferrably a teaching hospital as they are usually up on the latest. Once they do all the clinicl stuff and decide you have a type of EDS they will schedule you for a skin biopsy which will test for EDS Vascular type and look for a marker that may be linked to Classical type (but if you don't have that marker it doesn't mean you don't have Classical). Basically, save for Vascular type, EDS can only be dx'd by clinical signs - no medical test. As for the question about bleeding issues - each person is different. You have to look at your own body and decide if you have had bleeding and/or healing issues in the past, which it sounds like you do, and make your decisions accordingly. Also - there is a 9 point scale to test for hypermobility, or what you call double jointed. Basically it's one point each for each elbow that bends back 10 degrees or more, one for each knee that bends back 10 degrees or more, one if you can touch your palms to the floor with knees straight, one for each pinky that bends back toward the back of hand more than 90 degrees and one for each thumb that can touch the inside of the forarm. If you have a score of at least 4 out of nine you are considered hypermobile. There are many articles to be found on the three topics above - EDS dx, bleeding issues and hypermobility scales. Besides the Files section on the CEDA Yahoo site you can also check - http://members.rogers.com/ceda2/ (under Information) http://www.ednf.org/ (under Resources) http://www.atv.ndirect.co.uk/ (under Info Sheets & Publications) Hope that helps get you started. Feel free to jump in and ask questions anytime. If anyone here can help, they will. Again - Welcome! Hugs, B. HEDS, New Jersey, USA Quote Link to comment Share on other sites More sharing options...
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