CompassTracker

292d

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?

Psychogenic non epileptic seizure

Ehlers-Danlos Syndrome (EDS)

Hypothyroidism

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  • DrewSolazzo57

    292d

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

  • 100bumblebees

    283d

    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

  • Atatizakti

    282d

    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.

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