I've been diagnosed with hypermobility syndrome,i believe it's ehlers-danlos(so do a few of my doctors), but I'm having trouble with my insurance because I can't find a test to prove it. How is it these other people are diagnosed specifically with ED and not just hypermobility syndrome????? PLEASE HELP!!!!!
There is a test called a fish test and they do it in Colorado but it cost 3,000! My dr wanted me to have it done when I was pregnant to find out exactly what kind I had to know the risks involved. But you can basically read the description and see the type you have without going through all of that. By the way, I didn't get the test done bc it wasn't going to change my mind re: the pregnancy and it wouldn't change the treatment, so I didn't do it and everything turned out great!! I have a beautiful baby boy, good luck.
There is also a blood test that Mayo Clinic does. I live in Minnesota and the Mayo Clinic satellite clinic at the U of M has a blood test. They are performing the test to try to screen people for some of the more rare forms of EDS that include a blood disorder. The blood form of EDS can be fatal.
I have been diagnosed with EDS. I have been hyper-mobile my entire life. We never knew it was a "condition" as many people can be hyper-mobile. As I got older I developed further health issues. One thing that was pertinent for me is that I found I could dislocate joints very easily and relocate them. This hurt, but I could manage these injuries at home because they happened so often.
When I got older, this became more pronounced and I also developed problems in my back. I have now had 3 back surgeries/fusions. I am on Social Security Disability now.
Also, check out these sites: (2nd link has tests listed)