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Axel.heds

445d

Hello everyone, I was just wondering those with HEDS/EDS how hard it was to get a diagnosis I have only just been referred w/ suspected HEDs due to how sevre my systoms are.

Top reply
    • Student_girl

      443d

      I got diagnosed with Eds and pots at 16 (2 years ago), but had been having random dislocations for years before that. Doctors suck about rarer diseases

    • Student_girl

      443d

      I got diagnosed with Eds and pots at 16 (2 years ago), but had been having random dislocations for years before that. Doctors suck about rarer diseases

    • WickedFox

      443d

      I was unofficially diagnosed by a PT many years ago but wasn't able to get officially diagnosed until I had health insurance in 2021. It was pretty easy for me but I was near a geneticist in Boston. So proximity also matters

    • Bird1620

      443d

      I got diagnosed with POTS first. Started talking to my PCP about eds and he sent me to a genetic specialist, who wouldn't take me because they are only taking cancer patients. Got a new PCP who happens to have EDS. He listened to all my symptoms and agreed I have it-most likely hEDS he put it in my problem list as "hypermoble likely due to EDS" So it was fairly easy for me to get unofficially diagnosed, but no clue how to get officially diagnosed and not sure if it's even be helpful at this time

    • kasket

      445d

      It took me like 10 years to figure out what was wrong, but getting the diagnosis was easy because I had been testing for everything else and it was all coming up negative. I went “do you think it’s EDS?” to my doctor and now I’m diagnosed with it, I think that the years of failing to find something helped the process though

☝ 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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