Amyotrophic lateral sclerosis (ALS) is a rare disease that causes gradual weakness and loss of control of your muscles. Your thoughts, feelings, senses, and memory are usually not affected even though your body gets weak.
ALS affects the nerves in your brain and spinal cord that allow you to control and use your muscles. These nerves break down and are destroyed by the disease. Your muscles then get weak and shrink because the nerves that made them work are gone.
Symptoms most often appear between the ages of 40 and 70 years. The symptoms get worse more quickly in some people than others. ALS usually leads to death after several years, often from breathing problems or pneumonia.
This disease is also called Lou Gehrig’s disease.
What is the cause?
The cause of ALS is not known. It seems to run in some families. Some ethnic groups, such as Pacific Islanders, appear to be at greater risk. However, ALS most often affects people who have no family history of the disease.
Cigarette smoking increases the risk of ALS.
What are the symptoms?
Symptoms may include:
Stiffness, muscle cramps and twitching in your arms and legs
Weakness in your hands, arms, feet, and legs that makes it hard for you to do things such as fastening buttons, turning a key, opening a door, lifting your feet, or walking
Slurring or slowing of speech
Trouble making facial expressions
The disease starts slowly, most often affecting at first just one limb, such as a hand. As time passes, more limbs and muscle areas are affected.
Eventually you may be able to move only your eyes. To others it may look like you are in a coma, but you are usually still able to see, hear, taste, smell, and feel being touched. Bowel and bladder control, as well as your heart, are usually not affected. Breathing problems, pneumonia, or blood clots in the lungs may cause death.
How is it diagnosed?
Your healthcare provider will ask about your symptoms and medical history and examine you. Tests may include
An EMG (electromyogram), which uses needles passed through your skin to send mild electric signals and check how your nerves and muscles respond
Nerve conduction studies, which use small wires that are taped to your skin to send mild electric signals and check how well your nerves work to carry signals to your muscles. It may be done before an EMG test.
CT scan, which uses X-rays and a computer to show detailed pictures of the brain and spinal cord
MRI, which uses a strong magnetic field and radio waves to show detailed pictures of the brain and spinal cord
Biopsy, which is the removal of a small sample of muscle and nerve tissue for testing
How is it treated?
There is no cure for this disease, but treatment can help manage some of the symptoms. Your healthcare provider may prescribe medicines to:
Help decrease damage to your nerves.
Reduce saliva or drooling, especially if you have trouble with the muscles that control swallowing
Help with depression or mood swings
Relieve muscle pain, stiffness, spasms, and twitching
Help with trouble sleeping, poor appetite, or tiredness
Braces, walkers, or a wheelchair may help you get around. Physical therapy may help with muscle strength and your ability to move.
You may need a feeding tube if it is hard for you to swallow. You may need a breathing machine if you have trouble breathing or sleeping. As it gets harder for you to do things, you will become more dependent on others. For example, you may need help with eating, bathing, using the bathroom, and turning in bed. You may need to stay in a nursing facility if you cannot be cared for at home.
Ask your healthcare provider about clinical trials that might be available to you. Clinical trials are research studies to find effective treatments. Itâ€™s always your choice whether you take part in one or not.
How can I take care of myself?
If you have been diagnosed with ALS:
Talk with your family and your healthcare provider about your treatment options and concerns. Ask your provider any questions you have about the disease, treatments, side effects of the treatments, sexuality, support groups, and anything else that concerns you. Make sure you understand your choices for treatment.
Talk with your family, friends, and healthcare providers about what kind of care you want as the disease gets worse. For example, do you want feeding tubes and breathing machines to be used? Many people fear becoming unable to move, eat, or communicate at the end of life and may choose to limit their treatment. These are not easy decisions. Clergy, counselors, or hospice staff can help you talk with your family and decide what is best for you.
Follow the full course of treatment prescribed by your healthcare provider. Ask your provider:
How and when you will hear your test results
What activities you should avoid
How to take care of yourself at home
What symptoms or problems you should watch for and what to do if you have them
Make sure you know when you should come back for a checkup.
Learn all you can about ALS. Consider joining an ALS support group. You can get more information from:
Adult Advisor 2015.1 published by RelayHealth. Last modified: 2014-12-15 Last reviewed: 2014-12-15
This content is reviewed periodically and is subject to change as new health information becomes available. The information is intended to inform and educate and is not a replacement for medical evaluation, advice, diagnosis or treatment by a healthcare professional.