Patient education: Amyotrophic lateral sclerosis (ALS) (The Basics)

What is amyotrophic lateral sclerosis? — 

Amyotrophic lateral sclerosis ("ALS") is a disease that damages the nerves that control muscles. This causes the muscles to weaken. The muscles slowly stop working, leaving the person unable to move (called "paralysis"). Over time, the disease gets worse and leads to death. ALS is also known as "Lou Gehrig's disease," after the famous baseball player who died of the disease.

Most people who get ALS live only a few years after their symptoms begin. But some people live for 10 years or longer after learning that they have ALS. There is no cure for ALS, but doctors can treat the symptoms and prescribe medicines that might slow down the disease a little bit.

It can be scary and overwhelming to learn that you have ALS. But knowing what to expect can help you make decisions and plan for the future.

What causes ALS? — 

In most cases, there is no known cause for ALS.

In 5 to 10 percent of people with ALS, the disease is related to a genetic problem. When this happens, your doctor might recommend genetic testing. In certain cases, this information might affect your treatment options.

What are the symptoms of ALS? — 

The main symptoms include:

●Weak arm or leg muscles, usually starting in 1 arm or leg and then later spreading to other parts of the body

●Trouble speaking or swallowing

●Slow, stiff, or awkward movements

●Muscle twitches and spasms

If a person gets weak muscles in their hands or arms, they might have problems with:

●Using buttons or zippers

●Handling coins or other small things

●Writing

If a person gets weak muscles in their legs or feet, they might have problems with:

●Walking and turning

●Balance

●Climbing stairs

●Standing up from a chair or the floor

If these symptoms happen, the person might have other problems, such as:

●Feeling like the legs are "heavy"

●Dragging the front of the foot on the ground when walking

●Tripping or falling

If a person gets weak muscles in their head, neck, or chest, they might:

●Have a stiff jaw and a hard time opening the mouth

●Have trouble swallowing

●Have trouble moving the mouth and tongue to speak clearly

●Drool

●Not be able to fully close the eyes

●Have trouble holding up the head due to weak neck muscles

●Have trouble breathing

Some people with ALS have mood changes. They also might laugh, cry, or yawn at times when it doesn't make sense to do those things. In some people, ALS affects the mind and causes problems with thinking and language. (For example, a person might have trouble finding the right words for things.)

Are there tests for ALS? — 

If your doctor suspects ALS, they will ask about your symptoms and do an exam. They will also do tests, such as electromyography ("EMG"), to check how well your nerves and muscles are working.

You might also get other tests. These can help your doctor figure out if something besides ALS could be causing your symptoms. They might include:

●MRI – This is an imaging test that takes pictures of your brain and spinal cord.

●Blood and urine tests

How is ALS treated? — 

Treatments for ALS include these medicines:

●Riluzole (brand names: Rilutek, Exservan, Tiglutik)

●Edaravone (brand name: Radicava)

These medicines work by slowing down the progress of the disease a little bit. They might help people live a few months longer.

Other treatments can help people cope with the symptoms of ALS. They include:

●Breathing support – For this treatment, you wear a tight-fitting mask on your face or nose. Air and oxygen flow through the mask to help you breathe.

●Feeding tube – This is a small, flexible tube that goes through the skin over your belly into your stomach. You can then get special liquid food and fluids through the tube directly into your stomach.

●Devices to help with walking and talking, such as:

•A cane, crutches, or motorized wheelchair

•A special computer that "talks" for you. You can control the computer with hand or eye movements.

●Medicines to treat muscle spasms and weakness, drooling, sleep problems, pain, and depression

You can also ask your doctor about whether you can be in a clinical trial. A clinical trial is a scientific study that tests new medicines or new combinations of medicines to see how well they work. There are clinical trials for ALS all over the world.

What specialists are involved in ALS care? — 

You will probably work most closely with a neurologist. This is a doctor who specializes in problems with the brain and nerves. But other specialists are usually involved, too. These can include physical therapists, occupational therapists, respiratory therapists, dietitians, nurses, and social workers.

Many people get care in a "multidisciplinary" clinic. This means that a group of different specialists all work together as a team.

Where can I go for more information and support? — 

Many people find it helpful to connect with others who are living with ALS. Your doctor or care team can talk to you about how to connect with support groups in person or online. There are also organizations that can help with things like finding equipment or other services.

The ALS Association has a lot of information and resources. Their website is www.als.org. Their toll-free phone number in the US is 1-800-782-4747.

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