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BarbaraD

743d

Which doctors do you see

Top reply
    • Macemoments

      743d

      I too actually have PCP who has h EDS ‘ she is great! Helps me so much. I moved to OK from Houston, big change. I have 15 Dr’s here! 4 orthopedics because they all do something different. Hands, knee, back, neck, etc. it’s ridiculous. I keep a notebook to track them. The least helpful Dr is my Rheumatoid but I love her nurse practitioner. Just use her. But otherwise my Dr’s are great & understanding. But I advocate pretty strongly for myself. You have too to get anywhere! I have been doing this for 16 yrs though.

    • MedicalAnomaly

      741d

      I see a geneticist as needed (1-2 times every year or so). I have a really close established relationship with my primary care provider, who has taken the time to listen and learn about my condition. I also see neuro, endocrinology, pain management, and various ortho specialists.

    • Macemoments

      743d

      I too actually have PCP who has h EDS ‘ she is great! Helps me so much. I moved to OK from Houston, big change. I have 15 Dr’s here! 4 orthopedics because they all do something different. Hands, knee, back, neck, etc. it’s ridiculous. I keep a notebook to track them. The least helpful Dr is my Rheumatoid but I love her nurse practitioner. Just use her. But otherwise my Dr’s are great & understanding. But I advocate pretty strongly for myself. You have too to get anywhere! I have been doing this for 16 yrs though.

    • Donkeyfarts

      743d

      For my h-EDS, I see a family practitioner who just happens to be an EDS expert. His daughter has EDS so he decided to learn as much as he could (still learning and is up to date with the latest treatments and such) so he could give support and treatment to the local EDS community. It’s unconventional for a PCP/GP to be a “specialist” but he filled a gap that wasn’t being filled by rheumatologists, neurologists or any other doctors b/c many refuse to treat EDS, or say it’s “untreatable”.

      • justkittenya

        743d

        @Donkeyfarts You have a rare gem there!

      • Abbe

        743d

        @Donkeyfarts man I would love to know this doctor and where you are from

        • Donkeyfarts

          742d

          @Abbe he’s a doctor in Southern California, if anyone in the area is looking it’s Dr Fagan!

    • Bartender

      743d

      Where are you located? I live in Boston and see a bunch here.

    • justkittenya

      743d

      I see a ton of doctors, but I see Fran Kendall here in Georgia for my EDS diagnosis.

☝ 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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