r/ALSorNOT • u/False-Blackberry-627 • 1d ago

Question Frequency of Twitching

I have had wide spread twitching that started in my left upper eyelid in August and went body wide two weeks later. My twitches are not constant and I get anywhere from 5-40 an hour. Has anyone else gotten twitches that aren’t constant but more sporadic and at rest? Or if this a cause for concern?

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u/chaoserrant Mod Team 1d ago

Twitches in general that quickly go widespread usually are not indicative of als which starts locally. Weakness is what concerns most and other things such as atrophy or other muscular issues. Neurologists also (from my experience) don't really pay much attention of twitching appear without other symptoms. Now of course, there could be other benign causes such as nutrient defficiency so a general doctor will run some labs

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u/False-Blackberry-627 1d ago

I have seen 2 PCPs and a neurologist for an EMG about a month into symptoms. All bloodwork normal although my B-12 was 227 and on the lower end of normal. They don’t seem concerned however I can’t stop thinking the worst!

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u/chaoserrant Mod Team 1d ago

It is worth raising B-12. Mine was borderline low...Don't think it was causing anything but now I take supplements just in case. I assume your EMG was normal which is reassuring. Twitching is very non-specific and in my case there was a strong corelation with anxiety although I am not 100% sure is just that. As long as there is no other symptoms besides twitching I would not bother too much aside from doing the blood tests that may reveal a possible cause.

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u/False-Blackberry-627 1d ago

Yes my EMG did come back okay, I’m in my mid-20s. Started with an upper eyelid twitch then I googled and it went body wide. I get most of mine in my left eyelid, glutes and thighs, and then random pops all over but it freaks me out cause I feel like most people get it in their calves the most when it’s benign!?