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hello.its.me

159d

I was diagnosed with hypermobility after 5 years of arguing with Dr's who ignored me, but I've been told that can't possibly explain all my symptoms. I've asked for a second opinion, and want to raise the possibility of hEDS. what research or evidence should I take with me to get them to pay attention?

    • itme

      73d

      I'm so sorry that happened to you, unfortunately that's a very common experience with this diagnosis, a lot of doctors are just not well-informed. I would look into the Ehlers-Danlos Society website. They have a ton of resources and information on there, including how to assess hypermobility and a list of doctors who treat patients with EDS. I would also look up The Beighton Scale. The Beighton Scale has been the standard of diagnosis for hEDS since 2016 (however it's important to note that some doctors and patients disagree with it being the standard and it has flaws, so if you don't "pass" the test, don't let that discourage you. Seek treatment/dx if you're suffering). If you do look up The Beighton Scale, make sure you find the full assessment, it's several parts. There's also a lot of comorbidities (migraine, gastro issues, allergy/MCAS, POTS, ADHD, etc), so I would gather some information on those as well to see if you have any other health conditions that are associated with hEDS. If it's a primary doctor you are going to see, try to request a referral for a Rheumatologist or Geneticist, those are the doctors who typically diagnose EDS disorders and they should be more knowledgeable. I wish you good luck at your appointment! (The alike wisdom response has good suggestions also).

      • hello.its.me

        73d

        @itme thanks for your response! You have to pass the Beighton scale to be diagnosed with Generalised Joint Hypermobility where I am. That's what made me start looking into EDS. I've spoken to my physiotherapist a lot bc she seems to know alot more and she said my history of allergies, digestive problems and slipping joint as well as POTS-like symptoms lead to the possibility of EDS. I also got a second opinion from another GP who said to push for a referral for genetic testing because it looks like I could have cEDS and she wants to rule out having other types combined that could cause more problems. All I've got to do now is get my actual GP to do that, but they are doing better with prescribing medications so hopefully my appointment tomorrow will be the one that starts it all properly!

☝ 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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The replies suggest advocating for yourself, bringing someone with you, or asking the clinic for a patient advocate. You could also consider finding a geneticist who can diagnose it. If any doctor ever refuses to test you or provide you treatment, make sure to tell them to put on your chart that they're refusing you treatment & why they're refusing it. A lot of the time they'll change their mind and suddenly want to help you. It might be worth looking into an EDS specialist or even just a pain clinic.

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