Originally Posted by
kyllikki
I am having the exact same experience as you right now, except with some other sensory issues like mild numbness/"fallen asleep" feelings in my right foot and calf/shin, as well as butt. I also have confirmed L5-S1 nerve compression from a disc, affecting the right side with some impingement to the left, too -- so frankly, I am very lucky to have at least a partial rational explanation of my experience. My right calf/shin twitches almost continuously. My left calf/shin twitches less often, but still pretty frequently. Sometimes my quads and butt twitch too, and sometimes other things (abdomen, shoulders, biceps, a finger, my face, even my inner ear muscles) will also twitch. I am also convinced my own tongue, bite, and voice sound and feel weird, but I am not sure that piece is objectively true, to be very honest. That's why HA for ALS is such a wormhole: your brain can convince you of an awful lot.
I am going to offer an unpopular opinion: I'm not really a fan of the sticky Fishman linked, because the truth is, ALS can present very differently in different people
Plus, the sticky was written by ALS caregivers and ALS sufferers -- and honestly, I've become convinced those folks aren't 100% reliable narrators. Plus, last, we know astonishingly little about ALS
We don't know how or why it starts, we don't know what causes it, we don't know how to detect it before it's taken hold -- and we don't know how to slow it down or reverse it. It's a true black box disease
But what I will say is this: It's rare if you're under 40! And there are other things beside ALS that can cause exactly the same things that you and I are experiencing, so anyone you see for medical advice is going to start with investigating those more common conditions
I personally strongly recommend working on your HA in parallel to seeking a medical explanation. It's not unreasonable to want to know why you don't feel yourself. It IS unreasonable to not accept logical answers that fit the facts, once you have them
All best wishes to you