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Ehlers Danlos Syndrome, MCAS, POTS, and MALS
Bones, Joints & Muscles | Last Active: Jun 12, 2024 | Replies (46)Comment receiving replies
Colleen, we were disappointed that Rochester Mayo doesn't have an EDS Specialty Clinic as we live only an hour away. But my daughter has appointments at Jacksonville. I will be accompanying her to Florida but watching her children while she and her husband go to the appointments. It wasT very disappointing that she didn't get accurate info when she called Rochester Mayo, she could have gotten in much earlier to help her struggles. The woman she spoke to also had terrible customer service skills with no "bedside manner" with no patience and was quite short with her. Thank you for looking into that situation, we wouldn't want anyone else to receive inaccurate information.
Replies to "Colleen, we were disappointed that Rochester Mayo doesn't have an EDS Specialty Clinic as we live..."
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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