Looking for doctor recommendations for Ehlers-Danlos syndrome

Posted by rowan2003 @rowan2003, May 30, 2023

Does anyone have recommendations for doctors that know about EDS or can diagnose it? I had an E-consult with genetics (they just look at your chart, no actual interactions) and I was shut down pretty quickly saying that it's" very unlikely" that I have it (despite not seeing any of my hypermobility or diagnostic criteria). I have also been diagnosed with POTS which is a common comorbidity and I have been doing research on EDS for a couple of years now. Based on my history and research I know that I have hypermobile EDS and just need a doctor that believes me and can diagnose it. Any suggestions? I'm open to PTs, OTs, Primary Care, Specialists, etc based in Minnesota.

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Hollow Way | @hcambern62 | Nov 27, 2024

I am looking for an hEDS experienced doctor in Atlanta, GA and Washington DC Any recommendations?

gift440 | @gift440 | Nov 28, 2024

Have great Rheumatologist for this in Brunswick, GA. Might get referral from that practice.?

gigirl84 | @gigirl84 | Dec 25, 2024

In reply to @emo "Even if there isn’t a cure, I agree the validation is important. Plus, someone who can..." + (show)

@emo

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.

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I was diagnosed online through the EDS clinic out of Illinois. The one doctor does virtual visits for MN people

susantay | @susantay | Dec 26, 2024

In reply to @gigirl84 "I was diagnosed online through the EDS clinic out of Illinois. The one doctor does virtual..." + (show)

Hello, is the virtual EDS clinic for patients in MN only? I'm in Pennsylvania and looking for something similar. Thank you!

tkisereu | @tkisereu | Mar 4 8:15am

Dr. Maureen Bux, Duly Health in St. Charles, IL is my primary. I discussed my symptoms and history with her & shared previous genetic testing. She concurred further testing was indicated and ordered a genetic test specifically looking for connective tissue gene mutations. I'm not sure where you're located, but there are compassionate docs out there. Now you know you can ask for this specific genetic test to look for the EDS gene mutation like someone else might look for famial hyper cholesterol or breast cancer genetics. Best of luck.