← Return to Ehlers Danlos Syndrome, MCAS, POTS, and MALS
DiscussionEhlers Danlos Syndrome, MCAS, POTS, and MALS
Bones, Joints & Muscles | Last Active: Jun 12 9:01pm | Replies (46)Comment receiving replies
Replies to "Colleen, we were disappointed that Rochester Mayo doesn't have an EDS Specialty Clinic as we live..."
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