@upnort I understand your frustration of not finding a cause and getting a proper diagnosis. That kind of happened to me too with cervical stenosis and mild myelopathy that did not show up on the MRI and 5 surgeons turned me down. It was after I found medical literature with cases like mine, that I had an answer, and I sent that to Mayo with a request to be seen there and I did have spine surgery that resolved the problem. You can also check hospital rankings to look for other specialists. Currently In the rankings of US News and World Report, for hospitals, Mayo is #1, Massachusetts General Hospital is #2, Johns Hopkins is #3, and Cleveland Clinic is #4. There is also Becker Spine Review website that has numerous lists and news about what is current in the spine specialty, and news about specific specialists and their research and interests. Your neurologist at Mayo may be able to give you names of specialists at other institutions for a second opinion. Doctors who go to spine conferences will meet others and get to know something about them. They are there watching case presentations and learning about new techniques and research.

Something else that comes to mind that is worth asking about is if there is an infectious or inflammatory disease rather than a physical problem that could be causing the symptoms, something like Lyme disease, ALS, or MS. Those are things that spine surgeons have to rule out when they are searching for a cause of symptoms. Has your neurologist done testing for something like that or referred you to a specialist?