ALS (amyotrophic lateral sclerosis)

Overview

ALS affects the nerves that control voluntary muscles.

It often starts with weakness in a hand, foot, or speech.

Symptoms

Common signs:

• Muscle weakness and twitching
• Weakness that keeps getting worse

Less common

• Trouble speaking
• Muscle cramps

When to get medical care

Causes

Unknown; some genetic.

Does it spread or run in families?

• It isn't contagious. You can't catch it from someone else.
• It can run in families. Tell your doctor if a parent, brother, or sister has it.

Who is more likely to get it

• Family history

Diagnosis

A neurologist evaluates.

The exam

Nerve exam.

Tests

Tests, if needed:

• EMG:

Treatment

Get a care team.

Self-care

• Speech and breathing support
• Work with a care team
• Use mobility aids

Medicines

Medicines that may help:

OwieClear doesn't give doses: follow the label or your healthcare professional. Medicine names here are examples, not a full list.

Which doctor treats this

• Start with your primary care provider (family doctor or internist).
• They may send you to a neurologist (brain and nerve doctor).

Living with it

Support groups and helplines

• Muscular Dystrophy Association (MDA): Care centers and support for neuromuscular diseases.
• Genetic and Rare Diseases Information Center (GARD): Free NIH information on rare diseases, including where to find experts and patient groups.
• National Organization for Rare Disorders (NORD): Patient groups, help finding care, and aid programs for rare diseases.

Children, pregnancy, and older adults

• Veterans: Higher risk.

Pregnancy and breastfeeding

• If you're pregnant or planning to be, tell your prenatal provider about this condition.
• Don't start or stop any medicine on your own. Some are safe in pregnancy and some need to be changed.
• Ask before taking any pain reliever. The FDA advises avoiding ibuprofen and naproxen after 20 weeks unless your doctor says to.
• Breastfeeding: Most medicines are fine, but ask. The NIH LactMed database lists what's known about each one.

Outlook

Support improves life.

Getting ready for your visit

Bring a list of your symptoms and medicines.

What to bring

• A list of your medicines and supplements
• Notes on when symptoms started and what makes them better or worse

Questions to ask

• Are there clinical trials?

Research studies

Research studies test new ways to find and treat health problems. Some are looking for volunteers. Talk with your doctor before joining one.

Search ClinicalTrials.gov for studies on ALS (amyotrophic lateral sclerosis)