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Mia04byrne

446d

How easily did people get a diagnosis of EDS? Because I am currently stuck in a cycle of tests and doctors turning there nose up at me.

Top reply
    • chronicallyillchef

      444d

      It took probably about 10 years to be finally diagnosed because most people I saw brushed my pain to one side. It was only when I was being tested for arthritis due to the weather really hurting my joints that I got referred to a rheumatologist who diagnosed me with eds. As painful as the whole process of going back and forth, don't give up hope.

    • chronicallyillchef

      444d

      It took probably about 10 years to be finally diagnosed because most people I saw brushed my pain to one side. It was only when I was being tested for arthritis due to the weather really hurting my joints that I got referred to a rheumatologist who diagnosed me with eds. As painful as the whole process of going back and forth, don't give up hope.

    • Sarahaap602

      445d

      My cardiologist verbally diagnosed and I went to my gp and they asked rheumatology and they diagnosed it but I’m not sure what country ur in but in the uk national guidance at the moment is that a gp can now diagonse and rheumatology don’t need to see u unless you need to see them so it’s just on ur Beighton score I’m not sure if this is helpful to anyone I also had to wait 5 years to even see a cardiologist but I think I was still lucky in my diagnosis journey compared to others I’ve spoke to wish it was easier and we get listened to more

    • Mia04byrne

      446d

      yeah I went to a rheumatologist too and when I told her about my dislocations she looked at me as if I was speaking a different language and she obviously didn't believe me and she then proceeded to tell me that I wasn't even hypermobile even though I definitely (I have had the diagnosis since I was young) Yeah I get the frustration of not being believed like honestly every time I go to the hospital for something I always leave with no answers

      • Zebragirl

        445d

        @Mia04byrne the cold makes hypermobile joints appear stiff and since doctor's offices are always cold, I'm thinking that's why doctors don't see hypermobility when everyone else does

      • Zebragirl

        445d

        @Mia04byrne my rheum said the same things. I'm trying Pain Management next

    • Zebragirl

      446d

      I just had my first appointment after 4 months of waiting. It was a rheumatologist. She was nice but didn't really believe ne about dislocations (its a misconception that you always have to the hospital for dislocations - in reality if you can get it back in your own you don't) and said ny joints are stiff rather than what other doctors said which is hypermobile. She wants to test me for some kind of tendon inflammation but it completely neglects the joint issues and everything else I've been through. I firmly believe I have hEDS. The diagnosis fits like a glove. I'm very frustrated

☝ 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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