How were you diagnosed with EDS?

alright i'm curious to hear about other people's diagnostic process for EDS, i got diagnosed about 2 months ago, and my doctor just had me show her some of things like pressing my fingers back, stretching my skin etc plus we talked about my history with dislocations and chronic pain. her response was quite literally "oh wow, yeah, you DEFINITELY have EDS". we then talked about my family and how i'm pretty sure my bio dad also had it because he's had multiple knee surgeries and stuff like that. she then showed me the diagnostic rubric and told me i probably had a combination of 1 and 3, and then she showed me some stretches i can do to help relieve tension, and that was that. I'm curious now, because as i've been on this app i'm seeing people that seem to have gotten more extensive testing done, including genetic testing. and when i went into my diagnostic chart in my app, it didn't show up. I'm wondering if it's because she isn't a specialist or something? anyway, just looking to see if anyone has had a similar experience <3

Your answer

Student_girl

1y ago

It took me years to get diagnosed. I was diagnosed with heds using the Beighton scale (bendy show and tell), and other clinical criteria, and confirmed based on surgical reports of what my tissue looked like.

LifeInMulticolour

1y ago

Do you know which type of EDS you have? They haven't found the genetic marker for hEDS yet. I didn't have any tests either. The consultant who diagnosed me used the beighton scale, but he knew I had it without even examining me just from what I was saying (I already knew too).

alldeadalldead

1y ago

i am not sure which type, I believe my doctor said a combination of 1 and 3, but I don't know what that means really :/

4GIVN

1y ago

My experience was the same. My primary did the same flexibility tests and was positive I have it. She moved her practice and now my new primary doesn't know anything about EDs and is sending me to a specialist for hereditary testing.

alldeadalldead

1y ago

she also asked if i had any scars that had developed oddly, which i do, and asked if i bruise weirdly, and I also do

CuppaTea

1y ago

Hello, it took 21 years to get my diagnosis. I took my mum to my appointment with rumotology which turned out to be a blessing as they looked at her then me and decided it was genetic. I've personally not had any gene testing as the Dr told me they aren't sure the exact gene to look for. Hope this helps x

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

Alike is a transformative platform that goes beyond just bringing together patients; it meticulously connects individuals based on multiple critical factors, such as age, gender, comorbidities, medications, diet, and more, fostering a community of knowledge, support and empathy.

About Alike Wisdom Blog FAQ Editorial Team All Conditions All Posts All Communities

Your Privacy Stories Community Guidelines Terms of Use Privacy Policy Helplines Contact Us Group Chats Guidelines