Continuous Twitching all over the Tongue

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Oct 7, 2022
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Good day to everyone. I'm a 27-year-old male and all of a sudden started twitching all over my tongue 4 months ago (June 2022).

A little background: 5 years ago, I was diagnosed with Unilateral Sensorineural Hearing Loss and it was confirmed via MRI that my Cranial Nerve VIII was damaged. The hearing loss is profound and was also sudden, from perfect hearing to deaf on one side. I suspect that it was caused by an adverse drug reaction by what was prescribed to me at that time since that was the only different thing in my routine back then, one day my ear just suddenly popped a few hours after taking the meds. But it was never confirmed that it was caused by the meds.

Back to the twitching, my tongue is twitching continuously for 24/7 and gets worse and shaky when I move my tongue forward (it looks exactly like in this video of a guy with ALS but without the atrophy (video of tongue removed), my mouth also started shaking when I open it or smile. Most of the time, I could not feel the twitches when my tongue is at rest. At the same time, I also started getting frequent, but not continuous, wide-spread body twitches. I'm not 100% sure that I don't have weakness related to it since I usually feel fatigue, even prior to the twitching, due to my sedentary lifestyle.

I got a clean EMG about 2 months later (Aug 2022) and the neuro told me to get tested again after 6 months. I read in a post here that there is no such thing as "Too early for an EMG" but I still get worried about the progression even if it really turns out that this isn't ALS, I could not help but think if my tongue will still get atrophied and it will progress to dysphagia and speech problems.

The body twitching rarely happens recently since I was able to limit myself thinking about it after getting a clean EMG, so it might just be anxiety, however my tongue twitches are still continuous up to now.

Has anyone had continuous benign twitching in the tongue for years with no progressive weakness?
If, unfortunately, it turned out to be something malignant, how long has the twitching been going before it got worse?
Hoping that someone could share their similar experiences.
I will get another MRI in a few weeks hoping that could help with my diagnosis.

Best Regards,
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If you could post the EMG, we could comment more specifically, but it is hard to imagine continuous tongue twitching signaling motor neuron damage that was not picked up on EMG. And, of course, other body twitching that you can reduce by ignoring is hard to consider a serious thing.

As you know, tongue muscle movement is controlled by the Cranial Nerve XII. It is not impossible that it was damaged by whatever damaged your eighth nerve.

If you are in an area where there are deer ticks, I would ask for a Lyme test. I presume you have had basic lab work done.

I don't see ALS in this at all, and evidently, neither does your neurologist. Let us know what the MRI shows.

no twitching alone really means nothing.
I hope they figure out what is going on soon and help you return to full health but it sounds like the doctors do not believe ALS is on the table.
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