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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
I know it is very hard to be doctor-searching, but I wanted to prepare you- Mayo neurologists often refuse to order upright MRIs for EDS w/ possible CCI. They say uprights are unnecessary and give poor results. Mayo may not a good choice for neurology for those with Ehlers-Danlos, from what I've heard. Or in general for those with Ehlers-Danlos Syndrome. Across the board the doctors aren't even familiar with some basic current research. Please don't hold out any one doctor as your last hope, things are changing fast in EDS research. Wishing you the best-
Replies to "I know it is very hard to be doctor-searching, but I wanted to prepare you- Mayo..."
Hi:
I am not impressed with Mayo at all I went there for a balance problem and they told me that I have Functional Neurological Disorder which I do not have. I found out that I have severe arthritis in my spine plus I have subluxation in C2-C5 which nobody at Mayo told me. Plus I saw PA’s and DO’s so to me I felt that I was not taken seriously because I have a complex situation and they diagnosed me before all the test were completed. They suck
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Well I actually sent it to Neurosurgery or so I hope. I don't know if they're both equally uniformed departments on EDS. I actually sent the scans of the upright MRI scans I had done here with Dr. Gilete's report with his measurements (which are pathological). I also stated that I took the measurements on the above image before he evaluated me. I then said that the measurements I took and the measurements he took were only off .7-1 mm/degree, (which they were), to try to avoid eye-rolling about a patient taking measurements by his or herself. All they will have to do be informed on pathological skull angles and know that the doctor in Spain is legitimate. After that I see no reason other than incompetence and/or arrogance to refuse me treatment for this.The only option after this would be to fly to Spain to get my CXA normalized by Dr. Gilete. I would need someone to go with me though, that's the hard part. I'm so confused and have Avoidant personality disorder so it's a double-whammy. I'm completely fine with paying a medical bill for the rest of my life I just want to live instead of being afflicted and miserable because I don't have cognition anymore.