Amyotrophic Lateral Sclerosis: Causes, Symptoms, and Treatment
Medically reviewed by Achuta Uppu, MD, Internal Medicine. Last reviewed: October 23, 2026.
What kind of doctor treats Amyotrophic Lateral Sclerosis?
A neurologist (a nerve doctor) usually leads the care, ideally one who knows ALS well. A team of therapists, dietitians, and nurses often helps too. A direct primary care or concierge doctor can be a first stop for an evaluation and can refer you to a specialist when needed.
What is amyotrophic lateral sclerosis?
Amyotrophic lateral sclerosis (ALS), once called Lou Gehrig's disease, is a disease of motor neurons. Motor neurons are nerve cells in the brain and spinal cord that control muscle movement you choose to make, like walking or talking. In ALS, these nerve cells die over time. The muscles then weaken, twitch, and waste away. ALS is progressive, which means it gets worse over time. It does not affect the senses, and most people are able to think normally. Between 16,000 and 32,000 Americans are living with ALS.
Symptoms
Early signs can be easy to miss. They include:
- Muscle twitches in an arm, leg, shoulder, or tongue.
- Muscle cramps, tightness, and stiffness.
- Weakness in an arm, a leg, or the neck.
- Slurred or nasal speech and trouble chewing or swallowing.
As ALS progresses, weakness spreads to other parts of the body. People may have trouble swallowing, drooling, speaking, and breathing. Some have unwanted episodes of crying or laughing, called pseudobulbar symptoms. Weight loss and constipation can also happen. In time, most people cannot stand, walk, use their hands, or breathe on their own. A small number develop dementia or behavior changes.
Causes and who gets it
About 1 in 10 cases is due to a genetic variant (a change in a gene). In most cases the cause is unknown. In families with ALS, changes in the C9orf72 gene cause about 25% to 40% of familial cases, and changes in the SOD1 gene cause 12% to 20%. ALS most often starts between ages 55 and 75. Men are slightly more likely to get it than women. Some studies find that military veterans are about one and a half to two times more likely to develop ALS. The reason is unclear. Exposure to lead, pesticides, and other toxins may play a part.
How doctors diagnose it
No single test can confirm ALS. A doctor reviews your history and does a physical and nerve exam. Tests help rule out other disorders. These include electromyography (EMG), which checks how well nerves and muscles work, and magnetic resonance imaging (MRI), which uses magnets and radio waves to make pictures of the brain and spine. Blood and urine tests, a spinal tap (a needle test of the fluid around the spine), and genetic testing may also be done. An early, accurate diagnosis matters, because treatment may work best soon after symptoms start.
Treatment
There is no treatment that stops or reverses ALS at this time. But some treatments may slow it, improve quality of life, and extend survival. The U.S. Food and Drug Administration (FDA) has approved several medicines:
- Riluzole (Rilutek), a pill that may extend survival by a few months.
- Edaravone (Radicava), given by mouth or through an IV (a small tube in a vein), which may slow the decline in some people.
- Tofersen (Qalsody), a spinal injection only for people with a SOD1 gene mutation. Its common side effects include pain, fatigue, joint pain, muscle pain, and a rise in white blood cells in the fluid around the brain and spine.
Care also includes physical, occupational, and speech therapy. A feeding tube can lower the risk of choking and pneumonia when swallowing gets hard. Breathing support, such as noninvasive ventilation (a mask over the nose or mouth), helps as chest muscles weaken. A team of professionals is best prepared to build a care plan.
When to see a doctor
See a doctor if you notice lasting muscle weakness or twitching. Call 911 if swallowing or breathing gets harder, or if you have short pauses in breathing. These symptoms need immediate attention.
How a direct primary care or concierge doctor fits in
A direct primary care doctor charges a flat monthly fee instead of billing insurance, while a concierge doctor usually charges more and often works alongside insurance. This doctor can watch symptoms over time and manage everyday health needs. He or she can also coordinate the neurologist and therapy team.
Common questions
Is ALS inherited?
Sometimes. About 1 in 10 cases is due to a genetic variant. In most cases the cause is unknown. If a family member has ALS, seeing a genetic counselor may help.
How long do people live with ALS?
Most people die from being unable to breathe on their own, usually within three to five years of symptoms first appearing. About 1 in 10 people survive for 10 years or more.
Does ALS affect the senses or thinking?
ALS does not affect the senses. Most people are able to think normally, although a small number develop dementia and behavioral problems.
What medicines are approved for ALS?
The FDA has approved riluzole, edaravone, and tofersen, among others. Riluzole may extend survival by a few months. Edaravone may slow decline in some people. Tofersen is only for people with a SOD1 gene mutation.
Sources
- National Institute of Neurological Disorders and Stroke - Amyotrophic Lateral Sclerosis (ALS)
- MedlinePlus - Amyotrophic lateral sclerosis (ALS)
- U.S. Food and Drug Administration - FDA approves treatment of ALS associated with a mutation in the SOD1 gene
Medical Disclaimer
This content is for general educational and informational purposes only and is not medical advice. It is not a substitute for professional medical advice, diagnosis, or treatment, and reading it does not create a doctor-patient relationship. Always seek the advice of your physician or another qualified health provider with any questions about a medical condition, and never disregard or delay seeking professional advice because of something you read here. If you think you may have a medical emergency, call 911 (or your local emergency number) immediately.
