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731d

To those of y’all that have been professionally diagnosed, how was the process? I’m getting evaluated later this month for hEDS and my whole family is 90% sure I have it as am I. What should I expect?

Top reply
    • Atatizakti

      721d

      I initially saw a geneticist that was kind of an idiot. Although I met criteria, he was hesitant to dx me because he was afraid my hypothyroidism or vegan diet were causing my symptoms. He also thought I was having seizures. He referred me to a neurologist who told me it wasn’t seizures it was dysautonomia (and did testing for it) and confirmed that I have EDS.

    • Atatizakti

      721d

      I initially saw a geneticist that was kind of an idiot. Although I met criteria, he was hesitant to dx me because he was afraid my hypothyroidism or vegan diet were causing my symptoms. He also thought I was having seizures. He referred me to a neurologist who told me it wasn’t seizures it was dysautonomia (and did testing for it) and confirmed that I have EDS.

    • 100bumblebees

      722d

      I ended up having to get genetic testing done before getting my hEDS diagnosis, but before EDS was even though of, I got tested for pretty much anything else

    • DrewSolazzo57

      731d

      There’s a chance they say you don’t have it… keep pushing though. It’s a long process with many false negatives

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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