What is amyotrophic lateral sclerosis?

Amyotrophic lateral sclerosis, or ALS, is a disease in which certain nerve cells in the brain and spinal cord slowly die. These nerve cells are called motor neurons, and they control the muscles that allow you to move the parts of your body. ALS is also called Lou Gehrig’s disease.

People with ALS gradually become more disabled. How quickly the disease gets worse is different for everyone. Some people live with ALS for several years. But over time, ALS makes it hard to walk, speak, eat, swallow, and breathe. These problems can lead to injury, illness, and eventually death.

It can be very scary to learn that you have ALS. Talking with your doctor, getting counseling, or joining a support group may help you deal with your feelings. Your family members may also need support or counseling as your disease gets worse.

ALS is rare. Each year in the United States and most of the world, only 1 to 2 people out of 100,000 get ALS. Men get ALS slightly more often than women do. ALS can occur at any age, but it most often starts in middle-aged and older adults. ¹

What causes ALS?

Doctors don't know what causes ALS. In about 1 case out of 10, it runs in families. ² This means that 9 times out of 10, a person with ALS doesn't have a family member with the disease.

ALS is not contagious. So it can't be spread from one person to another.

What are the symptoms?

The first sign of ALS is often weakness in one leg, one hand, the face, or the tongue. The weakness slowly spreads to both arms and both legs. This happens because as the motor neurons slowly die, they stop sending signals to the muscles. So the muscles don't have anything telling them to move. Over time, with no signals from the motor neurons telling the muscles to move, the muscles get weaker and smaller.

Over time, ALS also causes:

• Muscle twitching.
• Trouble using your hands and fingers to do tasks.
• Problems with speaking, swallowing, eating, walking, and breathing.

ALS usually doesn't affect the ability to think, reason, or remember things.

Just because you have muscle weakness, fatigue, stiffness, and twitching doesn't mean that you have ALS. Those symptoms can also be caused by other conditions. So talk to your doctor if you have those symptoms.

How is ALS diagnosed?

It can be hard for your doctor to tell if you have ALS. It may not be clear that you have the disease until symptoms get worse or until your doctor has done more testing. To find out if you have ALS, your doctor will do a physical exam and will ask you about your symptoms and past health. You will also have tests that show how your muscles and nerves are working.

Tests needed to confirm ALS may include:

• Electromyogram (EMG), which helps measure how well nerves and muscles work.
• Nerve conduction studies to test nerve function.
• Muscle biopsy, which means taking a small sample of muscle tissue for testing.
• Blood tests.
• CT scan of the brain.
• MRI of the brain.

If your doctor thinks that you have ALS, he or she may also refer you to a neurologist to make sure.

How is it treated?

There is no cure for ALS, but treatment can help you stay strong and independent for as long as possible. It can also help you avoid other problems from ALS.

Physical and occupational therapy can help you stay strong and make the most of the abilities you still have. Speech therapy can help you keep your ability to talk after problems with speech begin. And there are several medicines that doctors can use to help relieve your symptoms and keep you comfortable.

What decisions will you face as ALS progresses?

If you or a family member has ALS, learn as much as you can about the disease and how to take care of it. How much treatment you want for the problems caused by ALS is a personal choice that only you and your loved ones can make. Your values, wants, and needs are important things to think about as you make choices about your care.

As ALS symptoms get worse, you may have to choose which treatments you want for things like problems with breathing and eating. As you make these choices, keep in mind that what's right for one person with ALS may not feel right for another person. It’s important to talk about your treatment options and share your concerns with your doctor.

You may want to put your health care choices in writing. This is called an advance directive or a living will. It gives you control over your own medical care when you can't make decisions or speak for yourself. You may also want to choose a friend or family member to speak for you. This is called a durable power of attorney. Making these plans ahead of time will help make sure that your health care choices are followed.

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