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Bertram.com

855d

I have been diagnosed with hyper-mobility by my pcp years ago and every doctor since has agreed; until i met with a genetics doctor about possibly having hEDS. They say i don't meet the diagnostic criteria even though i definitely do. Have you had similar problems?

Top reply
    • Fish.loves.cats

      833d

      I recommend watching izzy kornblau on YouTube. (Heds, hsd, hypermobility differences)

    • Fish.loves.cats

      833d

      I recommend watching izzy kornblau on YouTube. (Heds, hsd, hypermobility differences)

    • Fish.loves.cats

      833d

      https://youtu.be/nTAffLj-2cI

    • Fish.loves.cats

      833d

      This is extremely common being there isn't a test yet. They are only diagnosing people that they 100% know have it so it's easier to find the gene.

    • momeci

      853d

      Ok. Sorry to hear that. Maybe your doctors in the past weren't looking at the criteria for Hypermobility. A lot of people are flexible, but you have to score a certain number on the Brighton scale based. The number is also based on age, so if your young you need a higher number.

    • Bertram.com

      853d

      they are saying both, that because they don't think i meet the diagnostic requirements for hypermobilty that all of my other signs and symptoms aren't enough to diagnose me with hEDS

    • momeci

      854d

      They think you don't meet for hEDS or for Hypermobility alone? I had a doctor tell me recently that I was Hypermobile but I didn't need the hEDS diagnosis. I'm finding its hard to get diagnosed. I'll keep fighting for one. Wishing you luck in your journey

    • Feath

      855d

      I’ve been in a similar situation, not with this particular thing though. If your doctor denies evaluation for diseases tell them to add it to the record that they refused. Then see if you can meet with another doctor about it if they still don’t want to. Good luck with your medical journey 💛

☝ 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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