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Looking for doctor recommendations for Ehlers-Danlos syndrome
Bones, Joints & Muscles | Last Active: Dec 11, 2023 | Replies (10)Comment receiving replies
Any Drs in Rochester/MN/WI familiar with Ehlers Danlos (hypermobile)?
I have been looking for a Dr that is more familiar with Ehlers Danlos that is located in Rochester, MN clinic or WI clinics.I am unable to travel to Jacksonville.While it is noted that I have a connective tissue disease, most Drs do not feel comfortable enough to diagnose hEDS. I am 40 yrs old and no longer am able to do 9 out of 9 on the Beighton scale.I am able to do 6 out of 9 and when I was younger I was a 9 out of 9.I am not looking for a "cure", as like the dysautomic Dr in Rochester said "It doesn't matter, as there isn't really a cure". I realize that, but I would like validation that all these years of suffering was from something, and not just "anxiety and depression".
I have plenty other symptoms that correlate with hEDS as well.
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Even if there isn’t a cure, I agree the validation is important. Plus, someone who can support you and see how everything fits together can be better positioned to help coordinate care and hopefully effective treatments (I know, preaching to the choir here!) So it does matter.
I’m not from the area, so unfortunately I’m not familiar, but having been in a similar situation, I have some ideas?
If you’re near Rochester, have you tried getting into Mayo there to be evaluated? They have doctors who evaluate and treated EDS, but I’ve heard mixed reviews.
The EDS Society has an online directory: https://www.ehlers-danlos.com/healthcare-professionals-directory/
Also, it may be worth posting or searching the EDS support group on the website Inspire. There are a lot of postings asking about doctors and the group is pretty active.
I recently found an all-telehealth option: EDS.clinic. But it just opened in February, and seems like they’re not really up and running. I learned about them through this article: https://www.chronicpainpartners.com/a-new-eds-clinic-coming-to-a-town-near-you-via-telehealth/
I got so frustrated trying to get a diagnosis that I ultimately went to a PT who specializes in EDS. She can’t clinically diagnose it, but the evaluation was extremely thorough (90 minutes but it went to 2 hours). She reviewed the diagnostic criteria and provided detailed recommendations. It’s also expensive, but I was able to file a claim with my insurance. I did get validation.
She’s in Illinois though, but she may do online consultations (I don’t think PT can be delivered by telehealth out of state). This is the person my PCP recommended: https://www.wendy4therapy.com/
This PT I know for sure does out of state consultations online: https://www.lilianholm.com/ But I don’t know if she approaches evaluation the same way, and I don’t have personal experience. It could help if you’re more interested in treatment.