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Ehlers Danlos Syndrome - Who is the best doctor to see?
Bones, Joints & Muscles | Last Active: Jun 14, 2023 | Replies (44)Comment receiving replies
Referral for Ehlers Danlos Syndrome
I am looking to see if anyone in the Rochester or even Eau Claire area Mayo can recommend someone to see regarding EDS. I do see there is an Geneticist that does has done some research on EDS, however I am finding not the best reviews. I am willing to see anyone that has any experience with EDS in any department.
It has been years and being told for years that they cannot find any reasons for my joint pain, chronic fatigue, dislocating and hypermobile joints, chronic headaches and migraines, POTs/dysautonomia and most recently cervical instability. I really do not want to make the trip to Rochester, just to be dismissed without being listened to. I live near Eau Claire. I actually work for Mayo in Menomonie, WI and occasionally other clinics as well. (I can obviously get a referral from my PCP).
Replies to "Referral for Ehlers Danlos Syndrome I am looking to see if anyone in the Rochester or..."
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.
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@csalter Welcome to Mayo Clinic Connect.
Of course you want to find the best provider possible.
You'll notice that I moved your question to an existing discussion. I did this so you could connect with members like @rois4richo @healthhopefreedom @lovemyfamily2003 who have previously discussed this topic in a central location.
I understand you do not want to be dismissed. Where is the Geneticist that you have done research on? Are they at Mayo Clinic?