Understanding an ALS diagnosis
A plain-language starting point for people living with ALS and those close to them.
You do not need to understand everything at once. Start with what the diagnosis means, then make a short list of questions for your next appointment.
What does ALS mean?
ALS stands for amyotrophic lateral sclerosis. It affects motor neurons: nerve cells in the brain and spinal cord that send signals to muscles. As these cells stop working, muscles become weaker. ALS is also called Lou Gehrig's disease and is a form of motor neurone disease (MND).
It may first affect an arm or leg, or speech and swallowing. Over time it can affect movement, communication, eating, and breathing. It does not usually affect the senses, and many people keep their thinking intact, though some experience changes in thinking or behavior. The pattern and pace differ from person to person; another person's story cannot tell you exactly what will happen to you.
How is a diagnosis made?
A neurologist considers your symptoms, medical history, examination, and test results together. An EMG measures electrical activity in muscles; nerve-conduction testing examines how nerves transmit signals. Imaging and laboratory tests can help look for other explanations. A single symptom or an online checklist cannot establish the diagnosis.
Ask which findings support your diagnosis, what else has been considered, and whether an ALS specialist or second opinion would be helpful.
What can care do?
There is currently no cure for ALS. Treatments and coordinated care can help manage symptoms, support daily function, and, for some treatments, slow aspects of progression. An ALS team can help with breathing, nutrition, communication, mobility, emotional support, and planning.
Ask your clinician which treatments fit your situation and which decisions need attention now. You do not have to make every future decision at the first visit.
Source: Mayo Clinic — diagnosis and treatment · Care and treatment resources →
FDA-approved treatments
Four medications are approved in the U.S. Your neurologist can explain which may fit you, and copay help exists for each (see Grants).
Source: ALS Association — medications for treating ALS. For reviews of alternative and off-label treatments, see ALSUntangled.
Who is on a multidisciplinary ALS team?
ALS clinics bring specialists together in one visit, usually every three months. Ask for a Certified Treatment Center of Excellence, an ALS United care center, or an MDA Care Center near you.
Find an ALS clinic (ALS Association) · MDA Care Center network
Does ALS always run in families?
No. Many people diagnosed with ALS have no known family history. Genetic testing may still be relevant: experts now recommend offering it to everyone with ALS, because a result can inform treatment options (for example tofersen for SOD1) or research eligibility. The most common genes are C9orf72, SOD1, TARDBP and FUS. A genetic counselor can explain what testing may mean for you and your relatives, including its limits, privacy considerations, and potential insurance implications.
Questions to take to your next visit
- What supports my diagnosis, and is any further testing needed?
- Which symptoms or changes should prompt a call to the team?
- What are my treatment options, and what benefit and risks should I expect?
- Should we discuss genetic counseling, testing, or clinical trials?
- Who can help with communication, nutrition, equipment, benefits, and caregiver support?
- Who is my main contact between appointments?
You can bring a trusted person and ask for a written summary. If speaking or writing is difficult, tell the team how you prefer to communicate.
Keep exploring
- Understanding ALS: more reading →Mayo Clinic, NINDS, Your ALS Guide and the ALS Association.
- Evaluate treatment claims →ALSUntangled reviews of alternative and off-label treatments.
- Meet people who understand →Forums, caregiver communities and support groups.