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Thread: What are these symptoms?

  1. #11
    Update - found a good physiatrist who actually understands how EDS is impacting my cord function, and she's in Jersey!

  2. #12
    This is such good news! I am delighted for you.

  3. #13
    Senior Member ~Lin's Avatar
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    I'm so sorry that you have EDS as well! It truly is a terrible condition.

    It takes long periods for many to be diagnosed. The search for what was wrong began when I was 13 for me, the gradual decline was kickstarted by peripheral nerve damage from elbow dislocations followed by severe knee issues. 3 years of being tossed from specialist to specialist I saw a geneticist and was quickly diagnosed.

    Are you familiar with Dr Francomono and Dr Henderson? Dr F is one of the top EDS specialists, she's in maryland. Dr Henderson is a neuro surgeon who frequently operates on EDS patients with issues such as chiari and cranial instability. I believe you're closer to them than me! If I could afford to get down there to see Dr Henderson I'd do so in a second. I have issues with diagnosed cervical instability and possible cranial instability.

    Have you been diagnosed with dysautonomia? I think I read through your thread too quickly so I believe it was mentioned but I don't remember if you were diagnosed. I have dysautonomia as well, it was diagnosed after I developed IST (similar but a bit different from POTS).
    Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

    I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.

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