Stories
Privacy
Download
See Alike in...
Alike App
Browser
678d
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
Share
Chronic Generalized pain
Postural Orthostatic Tachycardia Syndrome (POTS)
advertisement
663d
@Hamster99 geez it only took me a month after submitting a referral
0
666d
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.
673d
How do you find a geneticist to? Is that different from a diagnostician?
668d
@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
675d
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 :-(
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
1
677d
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.
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
@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
☝ 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
Want to chat or share? Download the Alike app now and get complete access to Alike.health's unique features.
Instantly get answers to medical questions with our AI, built from the collective wisdom of our community facing similar experiences
Write your question here...
Download Alike for the full experience
Copy Link
Copied
Discover your Alikeness™ with people who are on the same journey, gain wisdom and get emotional relief in a secure & anonymous space.
4.7 Ratings
Scan code or click below download the app
Bupropion
night sweats
paranoid
Valium
sertraline
palpitations
Anxiety (Including GAD)
Depression
Alike health
Instantly get answers to medical questions with our AI, built from the collective wisdom of our community facing similar experiences
Related Questions