A neurologist describes what bulbar-onset ALS tongue twitching actually looks like.
If you’re scared that you might have bulbar-onset ALS because you see your tongue twitching when you look at it in the mirror, you may be shocked at what you’re about to find out.
For this article about what tongue twitching in bulbar-onset ALS really looks like, I consulted with Anthony P. Geraci, MD, associate professor of neurology at Donald & Barbara Zucker School of Medicine in New York.
Dr. Geraci explains, “Twitching of the tongue is a tricky subject, and that is because the vast majority of people who think their tongue is twitching are actually experiencing something else with their tongue, which could include:
“Tingling, numbness, some rare nerve disorders (many of which are treatable; inflammatory neuropathies), and very rarely dystonia, which is a problem that stems from the brain and not the tongue muscle itself.”
Dystonia is involuntary muscle contractions.
Dr. Geraci says that the only real cause of tongue twitching is ALS, and that “benign fascics never affect the tongue.” But hold on! Before you panic, recall that Dr. Geraci described the ALS twitching as “quivering.”
Just what does this quivering actually look like?
Dr. Geraci explains, “The quivering is very impressive in ALS; it looks like a bunch of worms squirming around just beneath the surface.
“It is much more pronounced than the normal movements we see when we stick out our tongues.”
WORMS?! Is this what you see when you inspect your tongue for hours every day? Or do you see very brief “jerks” in specific areas, jerking that looks like twitches?
When something jerks briefly, the word in the English language to describe this is a twitch.
People see the jerk, call it a twitch, and then think they might have ALS.
“People with ALS are never aware of the tongue twitching, NEVER,” says Dr. Geraci.
So if benign fascics never affect the tongue, then just what is that twitching you see in the mirror?
Let’s look at a great analogy: Suppose you’re nervous as sh— and are told to stand on one leg and hold the other out at a 45 degree angle. What are the odds that your outstretched leg will NOT be perfectly still?
The entire unit will be tremoring. This will occur even if you’re not nervous; it’s a sustained muscle contraction; the leg is not in a relaxed state.
There will be subtle movements, no matter how hard you try to keep the leg still.
When you examine your tongue for twitching, it’s stuck out; it’s in a state of sustained muscle contraction –even if it’s poking out just a little. Add anxiety to this, and what do you get?
Dr. Geraci explains, “So, to address the anxiety, if they see twitching they are seeing the normal muscle movements of the tongue — like standing on one leg, we can’t ever really get the tongue to relax when we look at it.”
I sent Dr. Geraci a YouTube video of a twitching tongue. Every so often in the video, there appears to be a very brief fascic in one area of it. I asked, “What’s going on with this man’s tongue?”
“The answer here gets a bit complicated,” says Dr. Geraci. “Because it is so difficult to really hold the tongue in a state of complete rest, one can’t say if the twitches on the video are fascics or an actual motor unit contraction (the motor unit being the nerve connected to the muscle fiber).
“If the motor unit sends an impulse, the twitch will occur, but that is a function of the fact that even though the tongue SEEMS to be at rest, that man had to stick it out and therefore by definition he is using the muscle and it is NOT at rest.
“So the answer I would say is that yes, a person can feel a twitch or movement of the tongue, but unless they are many in number—hence the quivering—it is likely that they are seeing normal contractions of the muscles from its nerve because they just can’t keep the muscle at rest.
That is one reason we do needle EMG on the tongue; the needle can discriminate between little contractions and fasciculations.”
Dr. Geraci also says that “it is incredibly rare for tongue twitching to be the first symptom a patient would have” in bulbar-onset ALS.
“If you think you are having twitching, gently stick your tongue out in front of the mirror and look at it.
“Twitches (from ALS) will make the tongue look as though it is quivering. If you see this, the best advice is to have your doctor or a neurologist take a look.”
Remember, the “quivering” looks like worms squirming under there, and despite this creepy description, the ALS patient with bulbar-onset will “never” feel this quivering or twitching.
Here’s an article explaining WHY the ALS patient with bulbar-onset NEVER feels their twitching.
Dr. Geraci is also the director of neuromuscular medicine at Northwell Health in New York.