If your twitching tongue is driving you mad with anxiety and fear of bulbar onset ALS,then you need to know how to rule out bulbar onset ALS, which is diagnosed in only about 600 people every year in the U.S. However, for some panicky individuals, this number is no reassurance if their tongue is twitching, and especially if they’ve been perceiving accompanying symptoms such as a heavy-feeling tongue, or a lopsided tongue.
Other perceived symptoms, that can cause alarm over bulbar onset ALS in some hyper-alert individuals, include difficulty swallowing, and the inability to rapidly speak a particular selection of words without mispronouncing one. Fear can play abominable tricks on the vulnerable mind. People with bulbar onset fear are very capable of spending huge amounts of time every day examining their tongue in a mirror for all sorts of nuances, ranging from comparing one side to the other, to counting the number of indents in the tongue.
Other tongue tests for bulbar that can consume a fearful person’s time include rapidly moving the tongue from side to side; pressing it as hard as possible to the roof of the mouth or to the side; sticking it out to see if it twitches; rapid chewing; and chewing tough foods. No matter how many tests such an individual subjects himself to, there’s never enough reassurance that they do not have bulbar onset ALS.
But is this endless menagerie of testing necessary? “If a person is really worried about having bulbar onset ALS, inspecting the tongue is not the exam to perform,” says Kristina Lafaye, M.D., board certified neurologist, assistant clinical professor of neurology at Tulane University School of Medicine, and full time clinical staff director of the neurophysiology lab at Ochsner Medical Center. “If they do not have any problems with swallowing, chewing, or controlling their secretions, then they do not need to bother looking at their tongues.”
Nevertheless, visual inspections of the tongue is a common, time-sinking occurrence amongst individuals suffering from bulbar onset hypochondria.
Dr. Lafaye emphasizes, “Looking at the tongue is irrelevant.” Dr. Lafaye explains: “Bulbar onset is marked by problems swallowing, chewing, and controlling secretions. There is coughing and a perception of food (liquids) ‘going down the wrong way.'” As for swallowing, chewing and controlling secretions, keep in mind that if you fixate on these elements, you’ll be prone to imagining or perceiving difficulties with these. The more you focus on every tiny detail of your eating experience, the more you’ll imagine something’s wrong.
The time to review your chewing, swallowing and secretion control is when you weren’t thinking about it. Look back and ask yourself how things went during that dinner with friends when you actually didn’t think about bulbar onset ALS or your tongue. Went pretty smoothly, didn’t it?
Dr. Lafaye says about the bulbar onset progression, “This is subtle and does not occur overnight. People with ALS have a very distinct speech which is impossible to describe, but it is a combination of spasticity and weakness. These individuals need swallowing studies and other diagnostic studies. They must have electrodiagnostic studies to assess for denervation in other parts of their body, because they do not have ALS if symptoms are limited to the bulbar muscles.”
