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With Feathers

[This was written earlier today as an email to family and friends.]

I’d like to write personally to everyone who I’ve ever accosted with long-winded tales of my excellent adventures in neurology, but even I don’t have enough time to write that much email. So here’s a somewhat impersonal email …

Most of you probably haven’t heard much since about two months ago, which was before I saw the specialist at the ALS Clinic at the U of MN Fairview. (Some of you might not even know or remember that my first neuro, on the basic of clinical exams, MRIs, blood tests and two EMGs, told me and Joann that although a diagnosis was not possible at that point, she felt that ALS—”Lou Gehrig’s Disease”—was a likely possibility, and gave me a referral for a second opinion with a specialist at the U’s ALS Clinic.)

So here’s what the last two months have brought …

First of all, very little change in my symptoms. Left arm may be weaker, but not by a whole lot. I’m still experiencing fasciculations, cramping, and exhaustion to about the same degree.

A little over a month ago I had my first appointment at the ALS clinic. I will spare you most of the details, but after a clinical exam and a review of my records and previous tests, he told me and Joann that he “suspected” ALS. Like my first neuro, he explained why a definitive diagnosis was not possible, but he left both of us no doubt as to what he thought would be the ultimate one. Both he and the clinic coordinator told me that the good news was that I have a slow onset, and that when it starts slowly progressive, it tends to stay that way.

They had me visit with their occupational therapist (to get to know her), and at the last minute decided against having their ALS Association liaison go through some sort of registration process (oh boy!).

I left that appointment with a referral for another EMG and a whole new round of blood tests. This would complete the “second opinion” process. My next appointment was scheduled for three months out at the ALS clinic, and I was told that this would probably be my normal schedule (evaluations at three-month intervals). But the doc told me that he would call me after he saw the results of the EMG to let me know what he thought about it. I made the earliest appointment I could for the EMG (to be done by another specialist at the U of M).

I didn’t get any good news that day (unless you count the “but it seems to be slowly progressive”). But, that was then …

I got a call from the clinic coordinator this week (she tried to reach me last week when I was in Hawaii). She told me that after reviewing the results of my latest EMG, Dr K believes that I “may have a motor neuropathy” (which these neuros seem to use as a catch-all term that excludes motor neuron disease/ALS). The test showed progression in my left arm (it’s getting worse), he said, but nothing “significant” anywhere else (somewhat puzzling, because the examining physician told me of an abnormal reading in my right hand). He wants me to take another more sensitive “ganglioside panel” blood test, and to make an earlier-than-originally-scheduled appointment with him. This appointment will not be at the ALS clinic, but at his office (at the Noran Neurology clinic).

So this is the first hopeful news I’ve had in quite a while about my case. It certainly doesn’t mean that he has ruled ALS out (coordinator says), but it seems to mean that he is less convinced than he was before that alternative explanations are unlikely (when he mentioned two differential diagnoses—multifocal motor neuropathy and monomelic amyotrophy—and proceeded to discount both of them). Some of the possibilities that I know of range from the not-so-great-but-not-fatal to “treatable, with full recovery possible.”

Some good news, then. It ain’t over until it’s over and all that. Don’t fill my position at third base just yet, and you’ll still see me playing volleyball, Scrabbling, birding, at Brit’s Pub trivia night, or wherever you normally see me (whatever it is—even if ALS—is slowly progressive). I might get to play Richard III in some community theater production some day, you never know.

Recent ALS Bites:
12/17/2019 Steve’s Emergency Communication To-Go
02/28/2019 Unhappy Anniversary
05/12/2017 The Eyes Have It
08/04/2016 YFALS National Corntoss Challenge
07/18/2016 Scopolamine Blues

   or see the  Complete ALS Bites

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