Ctat333 Posted April 17, 2014 Report Share Posted April 17, 2014 I was officially diagnosed with EDS by geneticist Dr. Gordor Wilson in Dallas, TX yesterday. He also diagnosed my Mom, 2 diagnoses for the price of one haha. He is going to bat with our insurance companies to try and get them to pay for totol genome testing. He has not given us a "type" of EDS yet, since my family seems to be more complicated lol. It blows me away to think that just a few months ago I was trying desperately just to survive long enough to let my insurance kick in so Incould go to a doctor and hopefully figure out what was wrong with me. Now, within just a few short weeks, I have my diagnoses. I can finally put a name on all this madness. I'm not thrilled to be chronically ill, but I'm so happy to have a starting point, at least. Quote Link to comment Share on other sites More sharing options...
Katybug Posted April 17, 2014 Report Share Posted April 17, 2014 Congratulations! It's so important to know what you're dealing with and also to be validated. Quote Link to comment Share on other sites More sharing options...
gjensen Posted April 17, 2014 Report Share Posted April 17, 2014 Congrats. Quote Link to comment Share on other sites More sharing options...
LastUnicornLady Posted April 17, 2014 Report Share Posted April 17, 2014 That's so exciting! I may or may not get a diagnosis of EDS fairly soon- maybe next month. I have an appointment with a doctor who is hoping to look into possible causes for the POTS, and I am suspecting that it might be EDS. Quote Link to comment Share on other sites More sharing options...
IceLizard Posted April 17, 2014 Report Share Posted April 17, 2014 Mixed feelings, I know. But, now informed treatment can begin. Glad to see your dedication and hard work has paid off. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted April 20, 2014 Report Share Posted April 20, 2014 I was recently officially diagnosed with EDS too. Not sure how to feel. Part of me is happy to finally know the underlying cause, part of me is sad it isn't something curable. And questions do remain... is this really the cause of everything? what now? I think it's going to help with acceptance, but after all these years of searching, I think it's going to take some time. I'm happy you were diagnosed pretty quickly and like you said, this is a starting point and maybe there will be things you can do to feel better. Quote Link to comment Share on other sites More sharing options...
IceLizard Posted April 20, 2014 Report Share Posted April 20, 2014 Even though I have an EDS diagnosis, I am having other testing done. Since MCAS and mitochondrial disease can come with EDS and cause dysautonomia, I am going to seek testing for those conditions. Monday I am going to be talking to my allergist about MCAS.I am trying to narrow down this list of possible causes: http://www.dysautonomiainternational.org/page.php?ID=150Also, people with EDS can have Arnold Chiari Malformation or cervical cranial instability, and these can cause dysautonomia as well. Quote Link to comment Share on other sites More sharing options...
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