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stones

687d

I'm not entirely sure of what I have but I suspect EDS. I believe my symptoms are very close to others with EDS but I wanted to know what others with similar symptoms have been diagnosed with or suspect they have

Top reply
    • PhiBee

      672d

      I’ve been tested for EDS so I can help lol :) bring it up to your PCP- they’ll most likely refer you to a heart dr. EDS can cause issues with your heart, so heart drs are the ones who generally do the testing. You’d get an EKG done, and then a test for symptoms (velvety skin, touching your toes, etc.) from that the dr can usually tell, but they’ll also do an echo to just check that your hearts okay. There are also specialists in hypermobility syndrome who you can get a referral to, but the heart dr would be first, and you’d need a referral from your PCP

    • PhiBee

      672d

      I’ve been tested for EDS so I can help lol :) bring it up to your PCP- they’ll most likely refer you to a heart dr. EDS can cause issues with your heart, so heart drs are the ones who generally do the testing. You’d get an EKG done, and then a test for symptoms (velvety skin, touching your toes, etc.) from that the dr can usually tell, but they’ll also do an echo to just check that your hearts okay. There are also specialists in hypermobility syndrome who you can get a referral to, but the heart dr would be first, and you’d need a referral from your PCP

    • stones

      686d

      how would you go about getting a diagnosis? I haven't really visited a doctor or specialist in a long time and have no idea how to navigate the process. I'm not sure what kind of professional to go to for diagnosis and/or treatment. I'm trying to schedule everything I can before I lose my insurance plan due to getting laid off. The last time I visited when I first got diagnosed I was told I was an 8/9 on beighton but when I brought up other concerns and symptoms I was experiencing I was told it was due to teen hormones and growing pains. I remember also being told there was no genetic testing available for diagnosis of certain forms of EDS, I'm not entirely sure how true that is.

      • Wobby_Goblin42

        684d

        @stones there's only no genetic test for hypermobile EDS which is the most common form, but there's a criteria you go through and if needed they rule out other types of EDS and also other types of connective tissue diseases/disorders such as Marfan's. Most known and noted forms of EDS now have a genetic marker at least that I'm aware, and hEDS is on its way to having a link after YEARS of research. If youve already been diagnosed as hypermobile you could see about getting into a geneticist. But if you're not positive you're going to pass the systemic criteria due to lack of evidence or diagnoses it's best to wait as unfortunate as it is, it would be a waste outside of getting their opinion on the matter and finding out what they see, especially if they can do an EKG and Echo. There's so many doctors outside of that bouncing around for years you may see finding out what's going on before you potentially get a Dx if you can't pass the criteria right now.

        • stones

          684d

          @Wobby_Goblin42 thank you

    • Wobby_Goblin42

      686d

      Hello! What would you like to know? I'm a 4/9 on beighton and a 5 on systemic, saw a geneticist a bit over a year ago. Have been told that with time and re-evaluation I should get an EDS diagnosis as I just haven't seen the right doctors yet to find all of my issues that I'm having. I know how it feels to fit way more into those with EDS than just hypermobility syndrome, while both can be debilitating, the two are different and EDS causes far more problems. But we're all different!

      • DarcyD

        684d

        @Wobby_Goblin42 On the Ehlers-Danlos Society website and in other research-based sources on EDS, I’ve actually seen more information saying that hEDS and HSD (hypermobility spectrum disorder formerly known as hypermobility syndrome) can be equally as debilitating / disabling and that some cases HSD can be more severe than some cases of hEDS and vice versa. You can have a ton of hEDS/HSD comorbidities (like POTs, fibromalgia, osteoporosis, gastroparesis, etc.) and have heart issues, prolapses, but still not actually meet ALL of the many hEDS criteria and therefore be diagnosed as HSD instead. That’s why both conditions are treated on an individual basis but with essentially the same range of potential treatment options for both. Wanted to share this because it’s potentially dangerous to perpetuate the misinformation that hEDS “causes more problems” than HSD when that is not always the case at all. Also, anyone reading this please fact check me vs. information on the official EDS Society website! (ehlers-danlos.com)

☝ 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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