Can ALS be in progress before it

starts causing weakness?

This question looms before people who are scared that their twitching muscles means the onset of amyotrophic lateral sclerosis – an incurable disease that is fatal usually within two to five years of diagnosis.

ALS but no Weakness?

Does this describe you:
• You’ve been having twitching muscles lately – perhaps somewhere on your legs, the bottom of your foot, your chest, a finger, maybe a toe or near an eye…

• Out of curiosity or out of annoyance, you decided to “look up” the cause of twitching muscles.

• Whatever you typed into the search engine brought up sites for a disease called ALS.

• You may have already heard of this lethal neurological condition, but never knew that “twitching muscles” is a symptom.

• Or maybe you’ve never heard of it. and your first intro was that of finding out one of its symptoms is muscle twitching – also known as fasciculations.

• You now can’t help but wonder if you have early ALS – even though you don’t feel weak.

• You then read up on this motor neuron disease and see conflicting information about the sequence of symptoms.

You scratch your head. You check your body for signs of atrophy and spot dents or grooves on one side of a body part but not the other. Your heart pounds with fear. Is this early ALS?

• Can atrophy occur before weakness?
• Can weakness occur before atrophy?
• How early must ALS be before the twitching and weakness begin?
• At what point does visible atrophy begin appearing?
• Before or after the weakness?
• Before or after the fasciculations?

The various permutations keep you up all night.

“ALS can start with fasciculations before the weakness occurs,” says Mitzi J. Williams, MD, a board certified neurologist and MS specialist, and clinical adviser for the Multiple Sclerosis Foundation.

However, if you’ve done your homework, you will have read that the occurrence of ALS is about one or two per 100,000 people. It’s a very rare disease.

Meanwhile, about 163 people per 100,000 die from cancer every year, says the National Cancer Institute. Even more die from heart disease, says the American Heart Association.

ALS isn’t even a top 10 killer. The flu is much more likely to kill you.

Meanwhile, millions of people every day experience harmless twitches of various muscles anywhere in their body – from tiny ones in their eyelid and above a lip, to major ones in their legs.

Dr. Williams explains, “Most fasciculations are not harmful and can occur with a variety of conditions including nutritional deficiencies, anxiety, overexertion and peripheral neuropathy.”

Peripheral neuropathy might have just grabbed your attention, but this condition is strongly associated with diabetes.

But it’s a condition of reduced sensation, not reduced strength. It’s often characterized by numbness or tingling.

ALS without Weakness

“It is more common that people notice the weakness before the fasciculations, but the inverse can occur,” says Dr. Williams.

The weakness is usually a sudden onset of abnormal weakness, not the weakness from overexertion or taking on more than you can handle.

Trying to hold a 30 pound dumbbell over your head for half a minute with one arm (when you haven’t strength trained for years) while standing on one foot hardly qualifies as a fair strength test.

Health anxiety could cause a person to perceive weakness in nearly everything they do – from having to put some effort into unscrewing a stubborn jar lid to deadlifting 10 fewer pounds than last week’s workout.

Pathological weakness would be more like suddenly not being able to lift a plastic pitcher of water.

Stop Checking for Dents

“Also, dents in the muscles are not necessarily the same as atrophy,” says Dr. Williams. “If this is something new that a person notices without a history of injury, it never hurts to seek an opinion from a neurologist for evaluation.”

However, noticing the so-called dents, indentations or grooves far more likely reflects a new awareness of your body’s natural and harmless asymmetry, rather than ALS.

“ALS is a progressive disease, and people do not normally have the same symptoms for years without worsening or progression to other parts of the body,” says Dr. Williams.

Mitzi Williams, MD

Mitzi Joi Williams, MD, is a board certified neurologist and multiple sclerosis specialist. She is also a speaker, researcher, educator and health equity advocate.