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Official Eds Diagnosis


Ctat333
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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.

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Mixed feelings, I know. But, now informed treatment can begin. Glad to see your dedication and hard work has paid off.

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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.

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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=150

Also, people with EDS can have Arnold Chiari Malformation or cervical cranial instability, and these can cause dysautonomia as well.

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