At that last appointment, Rick was right -- the issue was just too complicated to summarize on the phone. The neuro ordered three more tests: Copper levels, Vitamin E levels, and then a test for Neuromyelitis Optica (which is a very unpleasant disease that doesn't always have a great life-span). I was relieved to find out that I did NOT have NMO... but they said that my Copper levels were way too low.
The PA asked me who my hematologist is (the one who treats me for anemia and who does blood tests on me every three months). I told him, and he kinda raised one eyebrow. "She is going to find these results VERY interesting, I think."
Meaning, why the heck wasn't she routinely checking my copper levels? I'm a gastric bypass patient; it should be one of the regular tests.
The plot thickens. Or maybe it just opens up.
I'm now in a wheelchair during the school day; it had become difficult to get through my work day without being exhausted, and I wasn't at all confident in my ability to walk without falling, even with the cane.
In reading about copper deficiency, it appears that once I start getting copper supplementation, my degeneration should plateau, and in about half the cases, they recover some of what was lost. It appears unlikely that I will completely recover, however. Barring miraculous divine intervention, of course.