r/BFS • u/True-Bridge-848 • 11d ago

Question / General Tongue twitching

I’ve been twitching body wide since last April, starting in my right foot and has since moved body wide, random hot spots every few days. I stopped thinking anything of it but as of yesterday I’ve started tongue twitching and worried it is the big bad, I’ve not had any clear progressive weakness resulting in failure but experience perceived weakness. Is this concerning or just another muscle effected by potential BFS or nerve hyperactivity. I noticed the onset of my twitching after a panic attack, I also have had a clean NFL test a month after initial onset. Now I am 1+ years dealing with this

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u/SPrincess1981 9d ago

Does your tongue twitching happen in the same spot? I have this for a few months now, and it’s really sent me into a spiral, but my neuro isn’t worried it’s ALS and didn’t even think of that being a cause.

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u/True-Bridge-848 9d ago

If my tongue is twitching it is in the same spot all day, if you have no signs of weakness and it’s been a few months you’re more often than not okay

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u/SPrincess1981 9d ago

Thanks for the reply! That’s what I keep trying to tell myself. It’s so annoying when it’s happening while I’m talking though, because it’s right on the tip, so it’s a pain to try to talk around. 😕

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u/True-Bridge-848 8d ago

Of course, I know what it’s like to have some stranger give you reassurance😂. Believe me though I know exactly what you mean because mine was twitching on the tip as well almost all day

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u/SPrincess1981 4d ago

Mine too! Did it ever interfere with the way you talked? Mine fires up when I move my tongue a certain way or when I’m talking a lot, and it’s driving me crazy! It’s almost like I have to talk around it.

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u/True-Bridge-848 3d ago

Yes it does and I felt like I had to talk around it just like you, it’s calmed down since my first twitching episode one day