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FallenFeylah

840d

Hi, I struggle with possible hEDS. I’m in the process of getting a diagnosis. How long did it take everyone else to get diagnosed?

Top reply
    • Berta

      824d

      If you think you have it go to a geneticist who specializes in it then it’s a blood test for all the Eds and a physical eval for hEds . But if you don’t specify go and say you want the tests it could be years and years so go get the tests done

    • Berta

      824d

      If you think you have it go to a geneticist who specializes in it then it’s a blood test for all the Eds and a physical eval for hEds . But if you don’t specify go and say you want the tests it could be years and years so go get the tests done

    • Kat_A

      824d

      6 years and a lot of pushing to get my drs to put it on paper

    • greenbeans

      826d

      10 years of random illness. About one year after a doctor recognized it and sent me to a specialist.

    • pricklypear

      827d

      Dislocations started age 7, diagnosed at 15 😅

    • FallenFeylah

      837d

      AraS. That gives me hope

    • AraS

      837d

      Once I was sent to a geneticist, he diagnosed me in five minutes.

    • BumbleBree

      840d

      I’ll tell you when I get there. I have a fibro diagnosis (took 4 years to get) and now, 3 years later, my chiropractor just told me that she is almost certain I have it. Luckily the pain doctor I’ve been waiting for an appointment with for over a year and see in April is the same person she recommended I see for a diagnosis. Fingers crossed it works out!

    • Scarlet9904

      840d

      From first hearing of it 3years and 4 doctors took a genetics doctor to get my eds diagnoses

☝ 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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