Things I wonder…

[Johnny5]

I was 56.
My first symptom was twitching/fasciculations, verified by EMG in Jul 2015.

Fascics are muscles waiting for a signal, I was told. So they will keep happening until the muscle is gone, I assume. The brain signals the muscle to contract but fails to say stop. So the muscle keeps doing it.

[Dagmar]

I was 59. (that was in 2010)

My first symptoms were weak lower legs and feet.

Fasciculations? – – the important thing I’ve found is to keep the muscles healthy, strong, and mobile (range of motion movements or modified exercise). Try not to let weak muscles become weaker from disuse atrophy. Even if the messages from the brain to the muscles are limited, you can keep the muscles mobile and active. My fasciculations stopped when I began strengthening my muscles.
https://alsandwellness.blogspot.com/2023/05/what-i-thought-was-my-als-was-actually.html

alsandwellness.blogspot.com

What I Thought Was My ALS - - Was Actually an Impostor Symptom

ALS patient Dagmar Munn shares how exercises helped her handle 'learned nonuse' — and was able to cross her legs again.

[Amanda]

Hello Tiffany,
My first symptoms were severe cramping in my abdomen/torso, legs and feet. I went in circle with doctors for about 10 years trying to figure out why I was in so much pain in my abdomen area. Come to find out it was my diaphragm. That was in my 40’s. I was diagnosed at 55, in 2022. My cramping and fasciculations got worse until I started on QALSody (SOD1 mutation treatment). My experience has been very different than the typically pALS because I am a candidate for that treatment.

[johng]

Hi. I was 59 (6 years ago). It took 2 years to get a diagnosis. My first symptoms were a ‘lazy’ right foot, difficulty standing up when I was kneeling down and difficulty pronouncing the letter L.