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FunnyDuckling

622d

Hello! I need advice from those who have an official EDS hypermobile diagnosis. My PCP strongly suspects that I have it and referred me to a Rheumatologist. Unfortunately, the Rheumatologist was very dismissive and told me I could have EDS but wouldn't agree to get me the appropriate scans. What should I do next? Is there a different specialist I could go to?

Top reply
    • L1teralsatan

      616d

      I have Heds and the 2 separate rheumatologists were both very dismissive. I highly suggest looking online for doctors who specialize with EDS patients. Heds (to my knowledge at this time) still doesn't have a genetic marker unless one has been found in the last few months since they started doing research, so its tough to diagnose. I found my doctor on a list on an eds website, he only works with eds patients and athletes and thats it. I'd also suggest asking family members if any of them suffer from hypermobility. Unless they have been diagnosed with HEDS it won't definitely count towards your score for getting a diagnosis, but it can make it easier especially since it is genetic.

    • L1teralsatan

      616d

      I have Heds and the 2 separate rheumatologists were both very dismissive. I highly suggest looking online for doctors who specialize with EDS patients. Heds (to my knowledge at this time) still doesn't have a genetic marker unless one has been found in the last few months since they started doing research, so its tough to diagnose. I found my doctor on a list on an eds website, he only works with eds patients and athletes and thats it. I'd also suggest asking family members if any of them suffer from hypermobility. Unless they have been diagnosed with HEDS it won't definitely count towards your score for getting a diagnosis, but it can make it easier especially since it is genetic.

    • Caitlyn_C

      620d

      i'd also recommend a geneticist. scans are important but they're not necessary for a diagnosis (unless they suspect u have vascular ed's or something like that). the most important thing is to first get genetic testing and be evaluated with the brighton scale

    • Kinter

      621d

      Hello! I got my diagnosis from a geneticist, she did the Brighton Score and family history with me and ordered an ECHO of my heart to rule out vascular EDS.

☝ 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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