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Possible Ehlers-Danlos Syndrome with craniocervical instability
Bones, Joints & Muscles | Last Active: Jun 20 10:24am | Replies (68)Comment receiving replies
Thank you, and so sorry for your experiences too, sounds very similar. :/ All I'm even expecting is an "official" diagnosis, for the one thing, that has been outright refused elsewhere, which is why they refer to Mayo, because my needs are not being met, contrary to the generic letters sent out. I have always accepted my conditions, it's the treatment and access that is the issue. It's enough to attempt to make it to work, to support myself, and juggle multiple health conditions, then to be sent in circles (by many), for years. They all need to work together, they cannot all refuse certain groups of people. Other clinics have geneticists, makes it even more baffling. It's a very systemic issue, and hope that there are major changes and equity on the horizon.
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Hi @zebraspoonie, I think that I've read all the posts, but I may have missed something and if so please forgive me. I was Dx with EDS hypermobility (so far) by one of my neurologists and was surprised by it, knew nothing about it and came home and researched all I could immediately. I always knew that we were a super flexible family but didn't know that there was a diagnosis for it so you can imagine my surprise. Now my joints dislocate randomly more than ever when it just used to be my fingers locking up. Rheumatology isn't the right department as it isn't an auto-immune disease. Neurologists, cardiologists, and dermatologists are the correct doctors to Dx the primary types. Learn everything that you can about Ehlers Danlos Syndromes (there are 13 types - most of which are rare). It's possible to have more than one type - don't we know about that! Now for the usual news, it's not unusual for it to take time to find a doctor who actually knows EDS. My Rheumatologist just tried to un-Dx me via over a telemedicine appointment then going on later to state it's not an AI disease. She wasted my time and appointment on the trying to get me to bend my arthritic thumb to my arm. I wasn't Dx on my thumbs, nor just on my flexibility. I wrote into her office a week later and provided polite feedback about this doctor appointment. When the hospital asked me to review my appointment, I gave the same feedback. Nothing's comes out of it other than a bill over $200.
Hang in there and do not expect a Rheumatologist to assist you with a Dx. Find the appropriate doctor for the type of EDS. Wishing you blessings.