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Seeking advice on possible hEDS diagnosis

Wanderinglumos

536d

Hi potsie friends. I just found out yesterday that I’m being referred to a geneticist for testing for possible hEDS. I’m not sure whether or not I have it, but I could see how it makes sense that I could given my pain, injuries, and history. Those of you diagnosed with hEDS. How did you get diagnosed? How long did it take? Any tips? I had just gotten used to having a pots diagnosed so it’s feeling a little weird to start all over with possibly another one.

3

9

9

Chronic Generalized pain

Postural Orthostatic Tachycardia Syndrome (POTS)

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Top reply
    • Jujumom

      522d

      @Hamster99 geez it only took me a month after submitting a referral

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    • Hamster99

      525d

      I'm on a genetics wait list and they said it's like 3 years wait to see him, even tho 3 doctors have referred me for suspect EDS. I hope you get results soon.

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      • Jujumom

        522d

        @Hamster99 geez it only took me a month after submitting a referral

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    • Wondercell

      531d

      How do you find a geneticist to? Is that different from a diagnostician?

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      Reply
      • Wanderinglumos

        527d

        @Wondercell my neurologist referred me to one so I’m waiting for their office to call me back to schedule an appointment. I wasn’t involved in choosing one

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    • cellar

      533d

      hi! best of luck with ur geneticist appointment :-) i’m not diagnosed w hEDS but i did go through the testing for it! my rhemy rlly suspected i had some form of EDS (she thought hEDS), geneticist thought cEDS but my genetic test came back normal with some more digging i ended up being diagnosed w an unspecified autoimmune connective tissue disorder. i have a lot of similar symptoms & co-morbidities w EDS tho ! sorry i feel like i’m rambling but ur welcome to message me if you’d like! going through the diagnostic phase can be really difficult :-(

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    • Jujumom

      533d

      I’m starting the genetic testing process next week. Would love to keep in touch and updated ❤️ I have pots too along with a long list of others

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    • LeeannD

      536d

      It took me 19 years. Pain my whole life. Wrongly diagnosed at 12. I was diagnosed by a genetics doctor. My first visit she said I did not meet criteria by one item. I had been working hard for years to get well. She ran the tesing anyway, and I was diagnosed when the testing came back a month later.

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      Reply
    • SlothFan26

      536d

      It was hard for me to get diagnosed, but that was partially because the signs were missed for so long. Once I saw a specialist, I was diagnosed within my first visit (I had already ruled other things out and did genetic testing) You’re welcome to message me

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      Reply
      • Wanderinglumos

        533d

        @SlothFan26 thank you! I might message you to chat about it. I’m waiting to see when my appointment is but as I look up heds there are so many things that I have experienced for years that were always written off by drs

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☝ 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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