Though tongue twitching can result from bulbar-onset ALS, the patient never feels the fasciculations.

When a person has bulbar-onset ALS, one of the symptoms can be a twitching tongue.

These fasciculations look like worms squirming under the tongue, says Anthony P. Geraci, MD, associate professor of neurology at Donald & Barbara Zucker School of Medicine in New York.

Despite this appearance, the patient cannot feel the fasciculations. Why is this? Dr. Geraci explains:

“I think probably people who have tongue fascics don’t notice them because they are a relatively late symptom, even if the ALS is bulbar.

“By that time, the patient will have some tongue weakness which leads to difficulty eating and speaking — THIS is what they notice.

“We use our tongues so frequently that it would be difficult for someone to actually feel fascics apart from the background normal tongue movements.”

How often does the person with ALS experience their tongue twitching?

“The squirming is subtle and sporadic,” says Dr. Geraci. He adds, “The sensory nerves are indeed feeding that info centrally, but we have mechanisms in our brain to filter out sensory inputs, and my guess — this has never been studied — is that the brain suppresses those inputs because it is focused on other ‘duties’ of the tongue like eating and speaking.”

Dr. Geraci is also the director of neuromuscular medicine at Northwell Health in New York.
Lorra Garrick has been covering medical, fitness and cybersecurity topics for many years, having written thousands of articles for print magazines and websites, including as a ghostwriter. She’s also a former ACE-certified personal trainer.