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@sallysunshine

I have a lifetime of symptoms from EDS, and now have a name for it. I am presently being evaluated at Mayo, but not having a great experience. Twice there have been specialists who reviewed medical tests from Mayo and wrote reports without ever talking to me or asking me for medical history, and then they wrote reports saying I was fine. In both cases, they completely ignored the abnormalities on the tests and then declared me to not have medical conditions that I do not have, and that therefore the test is negative. They should have been focusing on the abnormalities of the tests, which happen to coincide with EDS, rather than saying I don't have POTS, and therefore am not sick. If I had known that going to Mayo would involve doctors being on my team who would not even meet me via telehealth, I might not ever have gone here.

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Replies to "I have a lifetime of symptoms from EDS, and now have a name for it. I..."

@sallysunshine I am sorry to hear that you haven't been happy with your visit. I am wondering if you've brought up your concerns with your care team and, if so, what they shared with you.

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