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hello.its.me

102d

had an appointment with a Dr this morning about the possibility of my hypermobility being caused by something bigger, because I seem to meet the criteria for hEDS and thought it would be worth looking into, but she just brushed it off and ordered blood tests for things thst have already been ruled out. what do I do now?

    • Chronicallyenby

      102d

      Don't let the doctor detour your. The best bet is to find a geneticist who can diagnose it. Advocate for yourself, bring someone with you, or ask the clinic for a patient advocate.

      • hello.its.me

        102d

        @Chronicallyenby oh I've never heard of patient advocates, I'll look into that! Only issue is getting a geneticist on the nhs is always a nightmare and there's always a long waiting list, worsened by the fact I live in cornwall and there's not many specialists here for anything :*

☝ 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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Based on the experiences shared, it might be beneficial to seek a second opinion from another doctor or specialist. Some individuals have found success in getting a diagnosis from a geneticist or a pain management doctor that specializes in EDS and hypermobility. It's important to advocate for yourself and continue seeking answers if you believe your symptoms align with hEDS.

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