How to Get Officially Diagnosed: Seeking Advice

Any suggestions on how to get officially diagnosed. I handful of my doctors agree with my suspicion, but none feel qualified to actually diagnose me. I am on state insurance which limits what doctors will see me.

Your answer

Chickpea

2y ago

If you suspect hEDS, the Ehlers Danlos Society has diagnostic criteria on their website that is designed to support primary care physicians in diagnosis. I was initially diagnosed this way, and then confirmed through a geneticist. Could be a good place to start.

Thistlefern

2y ago

I was diagnosed by a geneticist. I went on Facebook and found an EDS support group specific to my state. And everyone in there was SUPER helpful with posting reviews of doctors they’d been to. Helped me find just the right one.

buggy

2y ago

My noticable symptoms began with POTS and Dysautonomia. I started with a Cardiologist who referred me to a Neurologist and I finally made it to Geneticist. The Geneticist officially diagnosed me with hEDS. If you are struggling you could start there!

croix

2y ago

i too am looking for an official diagnosis, unfortunately that had to be put on the back burner as i recently had to have knee surgery (unrelated to my suspected EDS). 3 doctors have shared my suspicions and i am currently seeking a testing site.

Elisa

2y ago

I was in the same situation last year, it depends on who the doctors are. If they are joint people just keep pushing for a diagnosis and to be sent to someone with experience if they don't have it. Unfortunately you might have to do the bighton test multiple times. Good luck.

Smoky_Fred

2y ago

I suggest looking online for a center that has some experience with EDS, maybe with a proper medical geneticist, I think getting a formal workup and diagnosis is worth the drive.

Tomato

2y ago

My diagnosis was done by a rheumatologist

DrCasanas

2y ago

I've had genetic testing done through my neurologist. But haven't met with a geneticist. I'll reach out for a referral for that. I do have abnormalities with col6a3 which affects collegen production, but that's not known to be associated with eds at this time. Thank you

moonstone

2y ago

i found an integrative med specialist thru a primary who has it herself and helped go thru all the eds evals with me snd i was technically right on the line but she added it to my diagnoses list n

Rainfallen

2y ago

My orthopedic surgeon was the one to start the process of getting diagnosed I’m currently waiting to see a geneticist talk to your pcp about seeing one too they can give you the official diagnosis

Dolley

2y ago

I got diagnosed by an orthopedic surgeon

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.

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