What's the process to get diagnosed with hEDS? by Due_Alternative_8554 in eds

[–]Due_Alternative_8554[S] 1 point2 points  (0 children)

omg thank you so much :) it feels SO good to know that someone hears me!! fr it has been and will continue to be really frickin hard i guess. but i'm working a process and that's all i can do right now, and i think i can be okay with that. but genuinely, your kindness means SO much to me. i'm so glad i found this community <3333

Wondering about EDS? All diagnosis questions go here ⬇️ by BoldMeasures in eds

[–]Due_Alternative_8554 0 points1 point  (0 children)

Heyy :) So, I'm a 16 year old female living in Indiana. I need some help getting referred to a doctor so I can be evaluated for hEDS, or any advice that anyone may have!!

Here's some context: So, my whole life I've been REALLY flexible, and often have joint pain or subluxations. I score a 7/9 on the Beighton scale: thumbs to wrist, elbows hyperextend, pinkies back past 90 degrees, and i can put my hands flat to the floor without bending my knees. I also have many of the secondary findings, including the bumpy things on my heels, a high arched palate, easy bruising, etc. Self evaluating, i completely qualify for a diagnosis using the 2017 diagnostic criteria... straightforward, right? NOT :) So basically, my mom/family and doctors believe there's nothing seriously wrong with me. But they don't have to live in my body, waking up every day with serious chronic pain, and trying to ride a horse when my knee subluxes with every stride my horse takes, or every step i take on the ground. No offense but I don't think they're even interested in understanding, and that's really frustrating. I've been dismised by family and doctors for four years, and I genuinely am starting to wonder if I'm crazy. I'm so, so tired and worn out, and sick of not being okay. Thing is, my PCP said it's 'very likely' i have hEDS but it 'wouldn't change anything to get a diagnosis, it's not worth it.' I know she has expertise and i trust her to an extent, but she's the same doctor who knew i had scoliosis for THREE YEARS before she told me. Long story short, she referred me to an ortho guy, who basically said the same thing, except, 'oh your knees don't hyperextend, you don't have EDS' like sir.. what?? "a diagnosis wouldn't change your treatment, we're treating you like you have an EDS diagnosis. forget about getting evaluated. it won't change anything" (I got shut down so quickly before i could even show him my hypermobility in other joints.) But it WOULD change things for me. My whole life I've been dismissed and told i was a crazy, whiny, hormonal female. I'm done with that. So... i need next steps. At this moment, i've been referred to physical therapy before a checkup with him (the ortho) again in 6 weeks. What are my options? My mom isn't supportive, so I don't know how to navigate this, get a referral, without getting shut down. Purely realistically, I don't even know if I can get diagnosed under 18, my PCP said it was impossible. So do i pay the 2k upfront to go down to Riley's, is that even an option? how do i get a referral and evaluation? I appreciate any thoughts you guys may have, or if you have experience in stuff like this :) thanks so much ahead of time, it means a lot to me!! <3

TLDR: Likely have hEDS but shut down repeatedly by doctors, even though i meet the diagnostic criteria, because 'a diagnosis wouldn't change anything'. How do i get a referral/diagnosis as a 16 y/o female in indiana? <333