This site is about my brief journey with ALS. Amyotrophic lateral sclerosis. ALS is a disease of the nervous system with both no known cause and no known cure.
Probable symptoms first appeared in late 2017, but were visible by mid-2018, with a preliminary diagnosis in early 2019, and a complete diagnosis by early 2020.
ALS is progressive and the diagnosis is one of exclusion. The last one on the list.
The journey includes dozens of doctors, hundreds of blood tests, many MRIs, and a visit to Mayo Clinic in Rochester, MN. If your refrigerator has a freezer then you have a small idea of winter in Minnesota. On a good day.
The University of California, San Francisco, and the Veteran’s Administrations ALS Clinic in California also confirmed my doctor’s earliest diagnosis.
Interestingly, the visit to Mayo Clinic did not bring a definitive diagnosis because ALS is a progressive disease which is determined by ruling out everything else.
When you eliminate the impossible, whatever remains, however improbable, must be the truth.
Indeed.
My site will chronicle the journey but not in exasperating detail. I have had enough exasperation in recent years and prefer not to add to the weight of a life which will not end well, but which will end.
Instead, for better or worse, I will list a few of the more interesting steps along the way. Those who know me also know my brain is hardwired to my keyboard and I do not proofread, so if you run into misspellings or grammatical errors, just let me know. I might fix them if I have time.
— Ron McElfresh