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spitebun

327d

Hey cuties! Is it worth it to pursue a diagnosis in EDS? I recently learned more about the condition and what it all entails. EDS and POTS symptoms fit like a glove and make so much more sense then fibro, chronic Lyme, or some unknown autoimmune disorder. Did a diagnosis really change anything for you guys? I'm a little jaded from the medical experience I've had so far...

Top reply
    • CynWecandothis

      257d

      @ZebracornV Spot on! 👍

    • Leeeee

      308d

      Yes because it really does give you closure on what you have, but then it also does suck because then you go into the phase of googling everything about that disorder which then makes you a nervous wreck. That is what happened to me at least, but personally, get the diagnosis and check!! ❤️

    • Ghost125

      308d

      I'm currently waiting for my results and I can't wait. Like others stated, I already know I have it but I also feel like I may have multiple types. Other wise I just need the diagnoses so the doctors will take me seriously.

    • ZebracornV

      308d

      I think the diagnosis is super helpful - it helps you get in to see specialists you many not be able to easily see otherwise - it helps with diagnosis of comorbidities that DO have treatments - it helps to direct treatment and medication plan - specialists and hospital staff are more likely to listen to what you are telling them and explore / test for “zebra” things, instead of running basic tests and chalking your symptoms up to mental health issues.

      • CynWecandothis

        257d

        @ZebracornV Spot on! 👍

    • Mj_and_Otis

      309d

      I have a diagnosis for Eds and multiple comorbitities and it doesn’t help much with treatments but it does help doctors take you seriousley

    • Lilidoodles

      310d

      I think so. Of course, there’s not much treatment for it, but EDS effects enough things that we and our other doctors need to be aware of that it’s important to know about. It’s also helpful to know if you plan on having kids since it’s genetic!

    • CynWecandothis

      324d

      Putting a name to our diseases has benefits: 1) Validates our pain 2) Guides (knowledgeable doctors) about treatment options 3) Puts a name to our disease so when we do talk to medical staff that don’t know about our disease, whatever we tell them can be looked up in their medical journals. Because it’s not unknown in the medical journals and online. They just have to dig for it and read about it.

    • ginanic1221

      326d

      the diagnosis doesn’t change that there’s very little known or that dr can do for us. but it is nice feeling like i finally know what’s going on in my body

    • aquietmind

      326d

      I feel diagnosis is very important as we react quite badly to some medications and hospital staff should know that they could overextend joints handling you along with knowing surgery's may not heal well and were prone to infection along with it being your right to know this, good luck!

    • Keikochan

      326d

      Hi there, I am also in the process of trying to get my hEDS diagnosis. I am already diagnosed with Hypovolemic POTS but because I live on an island there are no doctors here that can diagnose me. However I feel the need and the right to know what kind of condition I am suffering with and I believe you deserve that too. I know it's hard for a lot of us out there, but we got this. Keep fighting :)

      • spitebun

        310d

        @Keikochan ❤️ thank you!

    • Pfeiffer

      326d

      I do think getting the official diagnosis was helpful. But after that I have been managing my symptoms on my own as much as possible, since it’s a lot of self care anyways.

    • Brokenbodyclub

      327d

      Depends, there’s a lot more too it then people think so if you truly have it, it can be helpful so other doctors can link things to it considering there are many comorbidities. If you don’t have the gene for it and only have hEDS it may be a bit harder to get a diagnosis, but can be still be really helpful depending on how much it effects you!!💗

    • SlothFan26

      327d

      Yes and no. It’s helpful when looking into comorbidities, but overall treatment for it doesn’t change much and many providers either don’t believe that I have it, or they’re not knowledgeable on it

    • Zebragirl

      327d

      I'm currently pursuing a diagnosis. I know I have EDS but I want proof from a doctor to tell other people and to get accommodations, mobility aids etc. Adults who don't understand what I've been through and won't are shaming me for the way I adapt and take care of myself. But they are in charge. With a name proven correct, I'm hoping to get what I need

☝ 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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