Hi Chester,
That's a lot on your plate.
My progression was so slow I was convinced it was wrong. I went to Mayo, University of Florida, University of South Florida, and Johns Hopkins.
My local neurologist believes he discovered some abnormalities very early on, long before I even noticed them. Back in 2013 I fell while on a run and suffered a traumatic brain injury. A few months later my metabolism was so fast I couldn't maintain 110 pounds on 3,500 calories a day. Finally, that stopped and I gained some weight, probably 10 pounds. The following Summer I was swimming laps but my left foot kept cramping. There was nothing I could take or do to stop it and it was only my left foot. That went on all Summer but I was still walking long distances, some short runs, lots of swimming, etc. The bottom of my left foot started to twitch and the cramps moved up to my lower left leg. About that time I went back to the neurologist and he did an EMG. He said he wanted me to go to Mayo for a complete workup so I put that off for another six months, then went to Mayo. Their first EMG was classic for ALS but I still had strength so they had me come back every three months for nearly a year before I was officially diagnosed.
That was nearly five years ago and I can still walk. Not fast. Not far. But I can walk.
One of the neuromuscular specialists believes that there is a type of ALS that starts very slowly and perhaps takes years to even manifest one symptom. He said he has seen other patients that last 10 or 20 years after diagnosis, but not many.
I know a guy who has lived 20 years. He's in a PWC and has a feeding tube but he still has the use of one of his arms.
So everyone is different. I've seen fast progressors slow down and almost stop progressing and I've seen people like me speed up quickly. Of course, other health issues only make it worse.