What about Secondary-Progessive MS?

Is anyone paying attention to SPMS? It seems like an orphan disease. I diagnosed it. Honest. My physician said “I guess you’re right.” I know MS is hard to diagnose, but isn’t it the physician’s job to do that?

The trajectory of my MS began with double vision (dx optic neuritis) in 1990, thus “possible MS.” Time passed, and I forgot about it. Seizures led to my MS diagnosis, in 2010. Did I have a 20-year remission? In retrospect, I see a definite, but gradual progression of gait and balance problems, numerous falls for no obvious reason, numb feet. “You’re kind of limp-y.” “You know how clumsy you are.” Such good support from friends and loved ones (I love them anyway!).

Since 2010, balance and gait problems have worsened. I use a cane. When I’m barefoot, it feels like I have shoes on. In hot weather, I crash. There have been no identifiable remissions since 2010, hence my self-diagnosis. I declined Copraxone, which my physician suggested, because I couldn’t identify the problem it was supposed to solve for me. I thought there was more evidence for progression than for relapsing. The problem for me is that no one seems to know much about SPMS. Why? What resources are available for SPMSers?

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