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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 who have 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. In most cases, death will occur within 3 to 5 years after symptoms begin, although some people do live for many years, even decades.
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.footnote 1
Doctors don't know what causes
ALS. In about 1 case out of 10, it runs in families.footnote 1 This means that 9 times out of 10, a person with ALS
doesn't have a family member with the disease.
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
Over time, ALS also causes:
ALS doesn't cause numbness, tingling, or loss of feeling.
Respiratory problems and problems with swallowing and getting enough food are the most common serious complication of ALS. As the muscles in the throat and chest weaken, swallowing, coughing, and breathing problems tend to get worse. Pneumonia, pulmonary embolism, lung failure, and heart failure are the most common causes of death.
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.
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.
Tests to confirm ALS or look for other causes of your symptoms
If your doctor thinks that you have ALS, he or she will refer you to a
neurologist to make sure.
There is no cure for ALS, but
treatment can help you stay strong and independent for as long as possible. For example:
A medicine called riluzole (Rilutek) may prolong survival by about 2 months.footnote 2 But it doesn't improve symptoms or quality of life in ways that people with ALS, their caregivers, or their doctors have been able to notice. Most people tolerate riluzole very well, but it can cause side effects, including nausea, vomiting, weakness, dizziness, and coughing. Treatment with riluzole is also expensive.
Palliative care is a kind of care for people who have a serious illness. It's different from care to cure your illness. Its goal is to improve your quality of life-not just in your body but also in your mind and spirit.
You can have this care along with treatment to cure your illness. You can also have it if treatment to cure your illness no longer seems like a good choice.
Palliative care providers will work to help control pain or side effects. They may help you decide what treatment you want or don't want. And they can help your loved ones understand how to support you.
If you're interested in palliative care, talk to your doctor.
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 issues like breathing and eating problems. For example, would you consider using a machine to help you breathe if your breathing problems become severe? Do you want a feeding tube placed in your stomach if you are losing weight, unable to get enough calories by eating, or if you lose your ability to swallow?
As you make these choices, keep in mind that what's right for one
person with ALS may not feel right for another. It's also okay to revisit your choices throughout the course of the disease. You may change your mind over time. Be sure 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
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.
Health Tools help you make wise health decisions or take action to improve your health.
Learning about amyotrophic lateral sclerosis (ALS):
Living with ALS:
Ropper AH, et al. (2014). Degenerative diseases of the nervous system. In Adams and Victor's Principles of Neurology, 10th ed., pp. 1060-1131. New York: McGraw-Hill Education. Miller RG, et al. (2007). Riluzole for amyotrophic lateral sclerosis (ALS)/motor neuron disease (MND). Cochrane Database of Systematic Reviews (1).
Other Works Consulted
Miller RG, et al. (2009). Practice parameter update: The care of the patient with amyotrophic lateral sclerosis: Drug, nutritional, and respiratory therapies (an evidence-based review). Neurology, 73(15): 1218-1226. Miller RG, et al. (2009). Practice parameter update: The care of the patient with amyotrophic lateral sclerosis: Multidisciplinary care, symptom management, and cognitive/behavioral impairment (an evidence-based review). Neurology, 73(15): 1227-1233.
ByHealthwise Staff Primary Medical Reviewer Anne C. Poinier, MD - Internal Medicine E. Gregory Thompson, MD - Internal Medicine Adam Husney, MD - Family Medicine Martin J. Gabica, MD - Family Medicine Kathleen Romito, MD - Family Medicine Specialist Medical Reviewer Barrie J. Hurwitz, MD - Neurology
Current as ofOctober 9, 2017
Current as of:
October 9, 2017
Anne C. Poinier, MD - Internal Medicine & E. Gregory Thompson, MD - Internal Medicine & Adam Husney, MD - Family Medicine & Martin J. Gabica, MD - Family Medicine & Kathleen Romito, MD - Family Medicine & Barrie J. Hurwitz, MD - Neurology
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