From ALS Bites

We’re all “Day-to-day”

For those of you scoring at home, here’s the latest Neuro-nonsense. Had my appointment with Dr K Tuesday. He’s not really changed his opinion based on my most recent EMG as much as I could hope (or as much as the ALS clinic coordinator, I felt, implied—see previous post on the subject “With Feathers”). He still “fears ALS.” Doesn’t think MMN (the potentially treatable differential diagnosis) is likely at all. Mentioned monomelic amyotrophy (MMA) again as a diff/dx, and as a form of motor neuron disease that “sometimes stops progressing in younger people.” Then he again said that he wouldn’t expect the widespread fasciculations with MMA. (I didn’t need to be convinced these are present, as I feel them continually, but they were detected and noted on the copy of the EMG report I received, and characterized as “non-specific motor irritability in both arms and legs.”)

jug o' peeBlood tests and a urine test for heavy metals still do not show anything (but I did get to pee in a big orange jug for 24 hours!). Another Lyme test—my third—was negative, and I don’t present like Lyme disease in any case. There is still one important blood test that hasn’t come back yet (it’s a re-test of something that was normal the first go ’round).

He emphasized again that the progression of my symptoms is slow, and that that is a good thing. So slow that it just isn’t possible to give me a diagnosis of anything. Not so slow as to be “outside the realm” for ALS, unfortunately.

Slow enough, too, that I don’t really feel any changes. In fact, now that softball season is over (I played four games last Saturday), I’m going to try to get back on my bike a bit and maybe commute to work on it again if the weather will cooperate.

I don’t have another appointment scheduled until December 21. Unless I experience significant changes between now and then (good or bad), I’m just operating under the assumption that I’m “day-to-day” and subject to a continuing series of “a game-time decisions.” As are we all.

Recent ALS Bites:
05/12/2017 The Eyes Have It
08/04/2016 YFALS National Corntoss Challenge
07/18/2016 Scopolamine Blues
03/06/2016 Dragon Me Down
02/12/2016 Five Years In

   or see the  Complete ALS Bites