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Ehlers Danlos Syndrome - Who is the best doctor to see?
Hello, my teenage daughter is being evaluated soon by cardiology, for possible EDS diagnosis. I believe the hypermobile kind of EDS. Who is the best doctor to see? Are there good doctors for this at the MN location? Thank you.
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I have a lifetime of symptoms from EDS, and now have a name for it. I am presently being evaluated at Mayo, but not having a great experience. Twice there have been specialists who reviewed medical tests from Mayo and wrote reports without ever talking to me or asking me for medical history, and then they wrote reports saying I was fine. In both cases, they completely ignored the abnormalities on the tests and then declared me to not have medical conditions that I do not have, and that therefore the test is negative. They should have been focusing on the abnormalities of the tests, which happen to coincide with EDS, rather than saying I don't have POTS, and therefore am not sick. If I had known that going to Mayo would involve doctors being on my team who would not even meet me via telehealth, I might not ever have gone here.
@sallysunshine I am sorry to hear that you haven't been happy with your visit. I am wondering if you've brought up your concerns with your care team and, if so, what they shared with you.
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1 ReactionMy internal medicine doctor realizes that the out of range issues on the tests are very serious. It is amazing to me that a cardiologist and a neurologist are ignorant of the serious kinds of medical issues which cause this to happen. I'm lucky I have a U of MN cardiologist who is a nationally recognized expert. I have found a neurologist in the cities who is also very good... some Mayo doctors are not so good.
@sallysunshine if you don't feel you received the care you came to Mayo Clinic for, I would encourage you to reach out to the Office of Patient Experience at 507-284-4988 from 8 a.m. to 5 p.m. Monday - Friday. Staff are available to discuss comments or concerns you may have regarding your medical care or privacy at Mayo Clinic.
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2 ReactionsI'll think about it. I have a new neurologist in the metro... she is with a physician owned clinic, and I like her a lot. Just met her today.
They do have specialists, but they seem to mostly be in FL.
Let me know if you find one!
The genetics Dr you mentioned, is that a Dr you saw? I've read some poor reviews on him. Online and in FB groups.
I'd like to find someone soon. My quality of life is low and becoming worse as times go on. I'd like to be able to function better. I'd like to go back to school (and still work for Mayo), but I cannot anytime soon due to my health. It's affected my depression and somedays I can barely get out of bed. I completely understand how some EDS patients take their own life. I can't blame them. I'm almost in that boat.
Wow! Thanks for the info. My PCP put in a referral to genetics, and an individual in the dept. told me he handles these referrals. Thanks for the warning.