Diagnosing Ehlers Danlos

Posted , 3 users are following.

I have all the symptoms and signs of Ehlers Danlos (hypermobility) and was wondering what kind of doctor I would go to for a diagnosis. I have chronic shoulder/trapezius and hip pain. Thanks!

1 like, 5 replies

5 Replies

  • Edited

    see a doctor that specializes in hypermobility spectrum disorders. there are so many different types.

    also ask about seeing geneticist and/or genetic counselor.

    Unfortunately, hypermobile EDS is a big bucket label for anybody with symptomatic hypermobility and mild systemic connective tissue involvement. In reality, this label captures many different disorders and each will have a different prognosis.

  • Edited

    This is a genetic condition and you need to see a genetics specialist who will ask you about your symptoms and then do a blood test. Hypermobility in itself is not Ehlers Danlos.

    Has your shoulder and hip been xrayed? Have you seen an orthopaedic consultant? A Rheumatology consultant?

    • Posted

      Thanks for the reply. No, I have never had them x-rayed. My GP is very dismissive of things so I was hesitant to bring it up. Maybe I should have them xrayed first before seeing the geneticist? I have some other co-morbitities of EDS which is why I was leaning in this direction.

    • Edited

      If you have another member of the family with ED then you may have it. Do you know of anyone? Grandparents, Uncles, Aunts, cousins etc?

    • Posted

      No one has looked for a diagnosis but my brother i know has had 4 shoulder dislocations so maybe!

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