caitlynlucille

541d

Is there a specific physician I should be seeing?

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Top reply
    • caitlynlucille

      536d

      @Macemoments I have a geneticist but was never referred elsewhere. 😔

    • Adria.B

      541d

      I don’t know where you live. But Dr. Jill Schofield is great. She’s based out of Denver and really helped me get my stuff together

    • Macemoments

      541d

      You should see a Rheumatologist or some people see a geneticist but I think they are few & far between. I don’t know what part of the country (US) but look on the main EDS website & I think their are Dr’s listed. Be prepared to wait a long time to get in. I have lived in 4 states since being diagnosed & the best Dr was the one who diagnosed me in 2004. But I am lucky my new PCP here has EDS! She is super understanding. Unfortunately everyone here in OK only does certain specialties so I have 15 Dr’s! 4 orthopedics! It’s crazy

      • Blinky

        538d

        @Macemoments I see a rheumatologist! That's how I got my diagnosis! I just wish she talked slower because I keep forgetting what the name of this is and had to pronounce it lol

      • caitlynlucille

        536d

        @Macemoments I have a geneticist but was never referred elsewhere. 😔

    • Berta

      541d

      On Long Island you have only 1 actual EDS doctor who is in Manhattan and she has a year and a half wait. Before you can see her. We used a geneticist to get diagnosed

    • I_Am_Not_A_Fish

      539d

      In Miami there is Dr. Irman Forghani at UM. She’s an excellent doctor but she has a very long waiting list

    • Zel7

      539d

      Consider a geneticist. Then work with your symptoms. For joint pain/issues see PT and OT, headaches see a neurologist, GI issues work with a GI specialist, anxiety/depression see a therapist and a psychologist. It's difficult to juggle it all sometimes, but fight for yourself so you can live your best life. Sometimes doctors dont always understand. But it'll be okay. You got this ❤️

☝ 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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