As a side note: do muscles twitch that hard in ALS patients? I am a caregiver for 7 patients and have never seen this before. Lots I dont know yet though. And Notme repored leg jerks.. None of my patients had reported leg jerks before.
I'm going to be tickled to death if the spasms in my legs are something else, trust me. I was worried it might be UMN signs--spasms and cramps--and yes, sometimes they just move all on their own--almost always when I'm sitting. But, if I lie down, my legs will just suddenly jump all on their own--which I call a 'jerk'
I've worked wtih ALS patients (for many years, actually) and spasms and cramps were common--but I worked mostly with residents in a nursing home.
But--I have other areas that jerk on their own--my jaw also does it, too.
My leg 'jerks' are uncontrolled movements--my leg moves up and down from the knee and it's painful if it doesn't stop immediately--I'm sure, because it makes the muscle sore from the repeated non-stop movements.
If it was a once in a while thing--I wouldn't worry at all--but it's very frequent and worsening.
I have no atrophy in my legs at all--in fact, they look better than they have in 30 years--but I'm still falling, still tripping on nothing, and tearing the heck out of my toes on my left leg.
My post here was intended to help terrified--I have no ALS diagnosis--I was trying to explain that the movements my leg do are not at all 'light' I keep thinking energizer bunny movements. I really doubt I could move my legs that fast if I tried (which I won't, LOL)
At their worst, my daughter has to take my leg and straighten it--because I can't stop it.
If this isn't something PALS here don't experience, or didn't experience early--all the better for my potential prognosis.
I have a whole host of other medical issues going on--and have absolutely no idea what causes what at this point.
I know from experience and reading here that pain isn't a normal part of ALS either--and believe me, pain is a huge issue for me. But what is caused from whatever is happening, and what is residual disability from my stroke and what is caused from a lot of bad discs and ....well, you get the idea.
it gets hard to sort out what is what.
Anyway--my intent in posting in terrified's thread was to try and allay her fears of ALS