Ashelton80 Posted March 7, 2012 Report Share Posted March 7, 2012 For those of you with EDS, did you have all of the bendy joints in your fingers, knees, elbows etc? I was reading last night about it and the only criteria I meet are flat feet (which hurt and drive me crazy) and premature rupture of membranes in pregnancy. Not sure if that would be enough to warrant a biopsy. I don't have any hypermobility or pain in any of my joints at all. The other thing I wanted to mention is that the first 2 weeks in April I am going to Dallas to the pots treatment center and doing Dr. K's 10 day biofeedback program. She has some very encouraging testimonials coming out of there if you want to check it out. I am hopeful between excercising (which has already shown to be beneficial) the biofeedback and starting licorice root that I will get very close to 100 percent. Trying to have some faith. I'll keep everyone updated when I get back! Quote Link to comment Share on other sites More sharing options...
roxie Posted March 7, 2012 Report Share Posted March 7, 2012 I know there are some people that aren't super bendy have EDS. But they usually do have a Beighton over 5. If you wonder about EDS you probably want to find a knowledgable geneticist. When my dr referred my I was prepared to have all the tests but the geneticist felt he had enough other evidence that he didn't need to do blood tests or biopsies. I don't have any physical signs of type 4 (which is the most dangerous) and would be found on a biopsy.He told me there are over 30 genes EDS can be on and each lab only tears 3-4 so truly tracking down the gene, if ever, can be difficult. All that to say and experienced geneticist can look at your history and give you a better idea of whether or not you need a biopsyI hope biofeedback is helpful for you. Keep us posted Quote Link to comment Share on other sites More sharing options...
E246 Posted March 8, 2012 Report Share Posted March 8, 2012 Hope the bio feedback goes well.Do you mind me asking is the beighton test the basic test for EDS? I think I probably have it but have not been officially tested.Thanks Quote Link to comment Share on other sites More sharing options...
roxie Posted March 8, 2012 Report Share Posted March 8, 2012 I believe it is but I don't know for sure.You can learn more about EDS and look for a dr on. EDNF.org Quote Link to comment Share on other sites More sharing options...
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