Bulbar onset?


New member
May 6, 2024
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Hello! I’ve had some strange symptoms that I’m concerned about it. The front right side of my tongue curls up when I stick it out and hold it in a semi-relaxed position while smiling. The front left side curls up too if I stop smiling. I feel random twitches on my tongue in addition to body wide twitches as well. I had a NCS/EMG done on the right side of my body and was told I more than likely don’t have ALS, but the tongue stuff is really concerning. This has been going on for about a year or so. I can still chew and speak. No issues with swallowing.

Could this be bulbar onset ALS?

Thanks in advance to all the PALS and CALS on this website!

So, should I not worry about bulbar if limb onset has been ruled out?
No responses yet. I’m not sure if that’s a good or bad thing. Anyway, I’m aware that body wide twitching points away from ALS. But the tongue curling? Does this sound like bulbar onset to anyone? It’s been going on for 8-9 months. I see an ENT on Monday, so hopefully they’ll have some answers.

Thanks again!
Sorry. I do think if anyone was worried they would have answered right away. Otherwise sometimes a post gets overlooked.

To me it doesn’t sound concerning for ALS and going o for months without dysfunction and a negative emg support that.

Good luck with the ENT
Sometimes the tongue can be irritated by alcohol in drinks, mouthwash, etc. or by hot/cold drinks, so you might try backing off if any of those applies.

But most likely you have a normal variant -- you know how some people can curl their tongue and others can't? It may be one of those things that can mushroom on you if you focus on it but is otherwise benign.

Be sure to let the ENT know if it's consistently this way or better/worse when you wake up/in the evening.
Nikki and Igelb - thank you for taking the time to respond. I attempted to reply a few days ago, but I was having issues logging in. I think it was just my browser being weird.

Anyway, I saw the ENT today. He looked at my tongue and noticed some fasciculations. He seemed pretty concerned. Which has naturally left me concerned. I have seen a few neurologists over the last year who don’t think I have ALS. I’m now more confused than ever!