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Ehlers Danlos Syndrome, MCAS, POTS, and MALS
Bones, Joints & Muscles | Last Active: Jun 12 9:01pm | Replies (46)Comment receiving replies
I haven't found anyone offhand in Rochester that has knowledge of hEDS.
I live in NW Wisconsin and no one that I know offhand in Eau Claire is comfortable with giving a diagnosis.
There is even a screening in our Epic system for hEDS, yet I cannot find a Dr comfortable to give a proper diagnosis.
I was highly disappointed in the Neuro Dr I saw for dysautonomia. I did mention the correlation between dysautonomia and hEDS and she literally stated "It doesn't matter, as there is no cure and you have to live with it anyway:"
If anyone has had health issues over YEARS and continually told you are completely fine, it takes a lot on your mental health to not be validated.
I do currently have a family Dr who has done more for me and listened more than the specialists I have seen.
Did I mention I even work for Mayo? If I go outside of the Mayo network, my out of pocket cost would be outrageous. It's all very frustrating.
Don't even get me started on finding a surgeon that is knowledgeable with cervical stability.
-Cassie
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I can completely relate to your experience, especially it taking a toll on mental health. And that's crazy--just because something doesn't have a cure, doesn't mean it can't be managed. That makes no sense. I'm so sorry that happened to you.
A few things just in case it might help someone here: I corresponded with someone on the EDS support group on the website Inspire. (I won't post it because sometimes I've done this on other forums and my post gets blocked, I guess for advertising? But you can easily Google it), and they mentioned they see Dr. Alexandru Barboi at Endeavor Northshore in Illinois. He's a neurologist and treats POTS. I've heard positive things. It might not help with the EDS directly, but I've seen his former colleague and she screened me for EDS, so they may be able to help with coordinating care.
Lillian Holm is a PT in Evanston, IL, who specializes in hypermobility. She offers online consultations for out-of-state patients.
EDS.clinic is a new telehealth clinic that just opened in February. I don't have any experience with it, and it's very start-uppy, but the co-founder has EDS, which seems promising. I'm on their waitlist.
I have been to the EDS Clinic in Jacksonville, and unfortunately I didn't have a positive experience. My workup/consultations are currently on-going, and it's been a year because there's been a lot of misinformation, poor communication, and lack of follow-up regarding scheduling anything that came after my initial in-person evaluation. I've said elsewhere on this site that I don't think they have bad intentions; I just think they need more administrative support because EDS patients are all complex and require multiple consultations across various specialties.
It was valuable to get a diagnosis and they offer genetic testing, if indicated. So it is worth it if you need a diagnosis since it's so freaking hard to find someone willing to go through the diagnostic criteria. I hope that the others on this thread who have planned appointments have a more positive experience than me. Hopefully, they've been able to fine-tune their protocol.