In an earlier post last week, I gave a brief history of my myelopathy journey with the Mayo Clinic. In that story, I did mention I had connected with a physical therapist in my hometown in northern Wisconsin who specializes in MRF. Granted, I only had two sessions, but I did not experience any relief from the numbness. Again, I have no pain but only the constant (read 24/7)reminder that my lower extremities no longer function the way they should. My symptoms are slowly progressing into that area where I have visions of a not-to-distant future filled with canes, walkers, and wheelchairs. Since the lesion is on the spine, the Mayo neurologists do not want to risk a biopsy, and the initial spinal artery angiography(January, 2019) revealed no abnormality. A year and a half later, the original diagnosis of thoracic myelopaty still stands, with no known cause, and no known "cure" or relief from said symptoms. Again, as I mentioned in two earlier posts, I have any a myriad of blood draws, scans, imaging, spinal taps, bone marrow biopsies, bone density tests – all with negative resuts. I visited Mayo again three days ago for yet another MR thoracic spine imaging exam and CT abdomen/pelvis exam. The results: negative, no change, status quo, zero, zilch – and the beat goes on…Now my Mayo neurologist, whose expertise is myelopathy, wants me to return to Mayo again for yet another test – a repeat of the invasive spinal artery angiography. How many times does a test have to be repeated until both patient and doctor say enough is enough. Frankly, I am tired of the testing scene as none of the above mentioned tests have yielded any – and I repeat – any clues as to why my lower extremities are slowly fading from practical daily use and function. I am not on any medication as, according to the Mayo neurology department, there is no cure for the weakening and numbness of the lower extremites (and again, according to the Mayo neuorlogical experts, the function that I have left will more than likely become further weakened).
Perhaps it is time to consider the possibility of presenting my case to the National Institue of Health, who routinely take cases that Mayo cannot solve, but I am not sure my case would even qualify for their consideration.
I have reached out to this site in the hope of giving me some insight, new information, or a glimmer of hope to find relief from this myelopathy (and it now begs the question perhaps Mayo does not want to hear: what if I have been misdiagnosed from the get-go?) My Mayo neurologist did say there are some cases Mayo cannot successfully treat because they do not know or have the answers. A thorough research of topics related to the spine, neuropathy, or the nervous system reveals symptoms that are extremely similar but yet different enough to give each a specific "marking" or classification. There are so many diseases of or related to the spine and nervous system that mimic most of my symptoms – all with different names and treatment plans. Maybe a second pair of eyes would be in order to have the question addressed, if not answered.
In the meantime, I will continue to push myself with discipline and as much of a positive attitude as I can muster.