ALS Myths

Dr. Jeffrey D. Rothstein, MD, PhD

Neurologist and professor at Johns Hopkins University and director of the Brain Science Institute, ALS clinic and Robert Packard Center for ALS Research addresses common myths surrounding an ALS diagnosis.

MYTH 1: ALS IS CAUSED BY LYME DISEASE OR OTHER INFECTIONS. ​

While Lyme disease and ALS can sometimes share neurological symptoms, they are very different conditions. Lyme disease is treatable with antibiotics, whereas ALS is a progressive neurodegenerative disease with no known cure today. Research has not found evidence that Lyme disease causes ALS, but sometimes Lyme can be misdiagnosed as ALS because of overlapping symptoms.

While ALS is defined as a motor neuron disease, its impact often goes further than just muscle movement. The loss of motor neurons affects essential life functions such as breathing, swallowing, and speaking, which are all motor-driven but critical to survival and communication. Additionally, many people with ALS experience behavioral changes, and about 10-15% develop a form of dementia (FTD), showing that ALS can also affect the brain beyond movement.

ALS is often thought of as a disease of older adults, but that’s a misconception. While the average age of diagnosis is between 55 and 65, ALS can strike at nearly any age and even in people in their 20s, 30s, or 40s. Many well-known cases, like athletes and veterans, were diagnosed at a much younger age than people expect.

Head injury or trauma are not proven causes of ALS. The disease is complex, likely resulting from a mix of genetic, environmental, and lifestyle factors. Ongoing research, including studies of athletes and veterans, is helping to clarify how trauma might interact with other risks. Injury and trauma could play a role, but likely as part of the other factors mentioned.

For decades, ALS research was defined by frustration: only two FDA-approved drugs exist, and their impact is modest. Clinical trials piled up, most ending in failure—not because ALS can’t be treated, but because we didn’t yet understand enough about the disease.

That’s changing. Today, ALS research is accelerating at a pace we’ve never seen before. Investments from industry and pharma are growing rapidly, powered by cutting-edge tools like AI and stem cell–derived patient models. Openly shared datasets, like those in Answer ALS, are fueling discovery across the globe. Each breakthrough builds on the last, creating momentum that’s reshaping how we approach both drug development and clinical trials.

While NIH and nonprofits remain crucial funders, it’s this combination—AI, open data, and bold industry engagement—that is pushing us toward real treatments. For the first time, we have both the science and the infrastructure to unravel ALS in ways that simply weren’t possible even five years ago.