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hello.its.me

58d

I finally have an appointment with a rheumatology consultant afterwaiting 5 years to be take seriously. hopefully I'll get the genetic testing I need for an EDS diagnosis. any tips on what to expect (uk)?

    • Sunflower.System

      58d

      My rheumatologist wasn't able to push through genetic testing for me, they said I'd have to pay out of pocket. My primary care doctor was able to get the EDS testing for me somehow, I didn't pay anything.

      • Sunflower.System

        58d

        @Sunflower.System I'm in the US so it's probably different

        • hello.its.me

          55d

          @Sunflower.System in the UK your GP, which is probably similar to primary car doctors, aren't allowed to send for genetic testing. Consultants are the ones who do that. My GP has already told the consultant I need it, so in theory they will just be a stepping stone for it. If a doctor believes there's a need for something, you are entitled to it on the NHS. The only reason you pay for medical care in the UK is to get it done faster

☝ 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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One of the replies suggests to write down every single strange thing that's happened to your body over the years before you go, present everything to them calmly and suggest EDS if it doesn't come up. Another reply advises not to ask for a specific diagnosis right away, but to see what they say first and if EDS doesn’t come up, then ask if they think EDS fits.

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