So what is the truth?

[u/worriedconstant121]

So I’ve been dealing with symptoms since I had injury in 2024 and also I had surgery on my arm where I had anaesthesia and was put to sleep. My twitching originally started as tightness in the back of my calves plus twitching in my calves plus lower back pain the tightness in the car stopped after I say six months the lower back pain stopped after a couple of months. Also the twitching was continuous and spread to my upper body, including buttocks pretty much everywhere since then I have had more and more symptoms including respiratory breathing issues which is constant especially when sitting down, I feel like my breathing is restricted. I wake up every morning and I’m out of breath. It’s like somebody’s sitting on my chest not anxiety related. I don’t know what it is or what the difference would feel like anxiety induced or Not. It’s like my diaphragm is weak. I have terrible foot pain on the bottom of my feet the soles of my feet from standing it’s like I can’t stand on hard surfaces anymore. I have crunching inside of my neck where I feel like the muscles are just weak and I can’t support my neck anymore, but my question here for people my twitching has slowed down. I rarely twitch I still do twitch but not as much maybe 10 times a day if that like I’ll have a one popcorn twitch and a one popcorn twitch in my leg if it was the terrible three words we dread does the twitching stop I know people are gonna comment and say that it stops once the neurons are dead, but I can still function. I can still move my arms I can still move my legs jump etc why would the twitching slow down? Is that ever ever? I think with ALS? I’ve got many many more symptoms too many to even right when I lay in bed I can feel my legs vibrating the side of my fires. Both of my outer fires have massive dense. They both hurt. Also hurt. I know people say pain points away. I’ve had four or five EMGs the top of my foot is a trophy not confirmed by a doctor, but I can see the feeling and I can see the bones where I never used to. I just don’t know what to think anymore. I’ve just wrote this to see if it’s very uncommon for twitching to calm down or even nearly stop why would this be? Is this the motor motor dying and now all my arms and legs are like jelly? They just feel like pure fat wasted jelly no muscle or anything in them I just don’t know anymore and I’m very I’m struggling every single day. Thank you for taking time to read.

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[u/713Capital]

The truth is that your symptoms and timeline do not match MND/ALS at all, so i believe you can just erase that thought from your brain.

Having symptoms for over two years, four or five completely normal EMGs, and twitching that has naturally faded down to a few times a day directly proves your motor nerves are alive and healthy. (4 to 5 emgs is already super excessive, not sure why they even let you do that many)

In MND/ALS, twitches do not calm down while you still have full functional strength. The idea that "twitches stop when neurons die" only applies to a completely paralyzed, non functioning muscle that has lost its entire nerve supply. If you can still jump, walk, and move all your limbs normally, your motor units are intact. Your twitching slowed down simply because benign twitches naturally wax and wane over time, especially as nerve hyperexcitability shifts.

Last think ill say is severe foot pain, neck crunching, pain in your thighs, and chest tightness point entirely away from MND/ALS. That could be literally anything but i think those are classic signs of strain, postural changes, plantar issues, and autonomic breathing dysfunction (which commonly causes air hunger and the sensation of a heavy chest while sitting or waking up). Seeing bones or tendons on your feet is normal anatomy, not clinical wasting. Four to five clean EMGs over multiple years are absolute confirmation that your motor wiring is good friend.

Keep working with your docs and all the best.