Possible ALS symptoms?

[melaniensb]

In June of 2024, I started experiencing muscle fasciculations. It started in my right leg but eventually moved to other muscles. Almost a year later and the fasciculations are in every muscle you can think of. They mostly happen in my legs, arms, and hands but do occur in my back, shoulders, feet, eyebrows, eye lids, lips, and sometimes my tongue (though not often). It’s not a jerking motions, just fluttering fasciculations. At some point, the twitching did slow down (unless i just stopped noticing it), but then in the past couple of months they’ve ramped up again.

It is all freaking me out and has sent me into a dark depression. I am a 26 year old female. I haven’t noticed any other symptoms over the course of the year, other than very rarely I have slight cramping. I had an MRI in July of 2024 to check for MS and that was said to be normal. I saw a neurologist in November of 2024 and she did an evaluation but didn’t really say much other than the fact that my MRI was normal but i read that MRI’s can’t detect ALS. Anyway, she did bloodwork at the beginning of this week and my CK levels were at 250 U/L and my sedimentation rate was 32 MM/HR. She wrote to me that this could indicate myopathy and that has me panicking as well. She is supposed to be calling me to schedule an EMG but i am still waiting and I’ve been spiraling.

I’d also like to mention that in February of 2024 i started experiencing pain, tingling, and some numbness in my left shoulder that comes and goes daily. I don’t know if it’s a pinched nerve or something or if it could be linked with the twitching or maybe even ALS?? I can still move my shoulder and lift things but it just it hurts sometimes with strenuous activity and heavy lifting.

 

[lgelb]

The good news is that adult-onset myopathy, even if that's what you have, is more treatable and less life-limiting than ALS.

Hard to know if the shoulder relates to the flutters, but no, pain as you describe is not a typical presenting feature of ALS. After the EMG, depending on the results, you could discuss imaging and/or PT.

 

[melaniensb]

would the fasciculations alone indicate ALS?

 

[lgelb]

No. Fascics are most often benign, especially when widespread and longstanding without significant functional impairment.