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Frequent dislocations and burning pain and numbness
I have been having frequent subluxations and dislocations. Recently my left thumb dislocated, which happens all the time, but it won't stay in place. I have seen ortho who doesn't know what to do. I have called all over and nobody will see me because I have hypermobility/possible eds. Denied at Mayo. Anyone have any recommendations about where to be seen in Minnesota? My thumb is very painful and I don't really want to live with a permanently dislocated thumb.
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I don't have any experience, but I know it is very difficult to get a diagnosis. https://www.facebook.com/TCMN.EDS/
https://www.ehlers-danlos.com/healthcare-professionals-directory/
You might see what a chiropractor could do about the thumb.
It is good you are pursuing this. Be aggressive.
I hope you find help and better answers than this.
Hi @gus1225, it may be worth your time to check out the discussion titled: Doctors for EDS, https://connect.mayoclinic.org/discussion/doctors-for-eds/. As @gently mentioned, it is a difficult diagnosis.
@gus1225, because your ortho is unsure of what to do, have you specifically asked them for a referral to a specialist or someone they recommend that could help with a diagnosis?
They gave me a referral to Mayo Clinic, but that's it. I told her they did not accept me so she said she didn't know what to do. It's really hard to find someone in ortho who is willing to work with people with EDS.
gus1225, I have heard that Mayo doesn't accept the EDS diagnosis. Which is different than not accepting you. I have heard that there are good EDS mds elsewhere. I'm trying to find old posts that identify those doctors. Maybe a fellow EDSer will respond.