Hi everyone. I’m posting here because for the past few months I’ve been extremely scared about what’s happening to my body, and I honestly need outside opinions from people who may have gone through something similar.
I’m a 28-year-old female, 170 cm tall, around 60 kg. I work from home and live a pretty sedentary lifestyle. I usually only walk around 2–3k steps a day, mostly because of walking my dog. I don’t work out. My diet isn’t the best – mostly carbs and fats, a lot of sweets, probably not enough protein. I don’t drink alcohol, but I do use nicotine pouches daily.
Everything started around mid-December last year. That’s when I first noticed muscle twitching (fasciculations). At first they were mostly in my legs, but I also had them in my arms, thumbs, sometimes even my face. There was a period where they felt widespread all over my body. Then they got better. Then they moved into my thigh and became very strong. Then they stopped. Then they came back in my calf almost constantly. Now there are days where I barely notice them at all.
Besides the twitching, my legs started feeling “different.” It’s very hard to describe. Not exactly weakness, but heavy, tight, tired, sometimes almost unstable. Sometimes it feels like they’re not working the way they used to, even though I can still physically do things.
When I go downstairs, my leg muscles shake a lot. If I hold a muscle in a contracted position (legs, arms, even abs sometimes), it trembles. I feel less physically durable than I used to. Sometimes while walking I hit the ground or small objects with my foot, like I didn’t lift it enough. Sometimes it feels like I slightly drag the front of my foot, but not constantly.
When I lie down, especially at night, my legs often feel tight or uncomfortable, like I need to stretch them, rotate them, or move them around. Moving them usually helps.
I also noticed indentations/dents (i can post pics if needed) in my calves that I swear I never noticed before, especially in areas where I’ve had twitching. This scares me a lot because I immediately think about muscle atrophy.
Another thing: when I’m falling asleep, I often get strong jerks/twitches in my fingers, hands, legs, or sometimes my whole body, like a sudden startle movement.
I’ve already been to a neurologist. They did a full clinical neuro exam – balance, walking, finger-to-nose, strength testing, reflexes, coordination, etc. The neurologist told me they didn’t see any neurological deficit and didn’t think anything obvious was wrong. I haven’t had an EMG yet.
The confusing part is:
* I can still walk normally
* I can stand on my toes
* I can stand on one leg
* I don’t fall
* I don’t drop objects
* I don’t have one movement that I objectively “cannot do anymore”
But despite all of that, my body does not feel the same as before, especially my legs. I feel like something is wrong, and I’m terrified I could be in the very early stages of ALS.
Have any of you experienced something similar — widespread twitching, muscles shaking when contracted, heavy/tight legs, dents in muscles, weird body sensations, fear of ALS?
Based on this story, does this sound more like BFS/anxiety/deconditioning, or is there anything here that would make you seriously think about ALS?
I would really appreciate honest opinions or personal experiences.