• ALS is not contagious.
• There is no cure for ALS (though there has been recent research progress).
• An estimated 90% or more of ALS cases are considered sporadic, or random, with no known cause. Up to 10% of cases are familial, meaning that it runs in the family and was inherited.
• The average life expectancy for a person with ALS is two to five years after diagnosis.
• Ten percent of people with ALS will live ten years or longer after diagnosis.
• There is no one definitive test to diagnose ALS. It is a process of elimination that involves ruling out other diseases.
• An estimated 20,000 people in the United States have ALS at any one time. Every year, roughly 5,000 to 6,000 people get diagnosed.
• Americans and Canadians refer to this disease as ALS. In the UK, Australia, and parts of Europe, the common term is MND, which stands for motor neuron disease.
• ALS can affect any person, regardless of age or ethnicity. However, the average age of diagnosis is 55 (40–70 is the typical range), it affects more males than females, and the vast majority of people diagnosed are Caucasian.
• Military veterans—particularly those who served in the Gulf War—are approximately twice as likely to be diagnosed with ALS as the rest of the population.
• The U.S. Food and Drug Administration has approved two drugs to treat ALS—Rilutek (riluzole) and Radicava (edaravone). Rilutek does not reverse a patient’s condition but has been shown to prolong life for about three months. Radicava had a promising clinical trial in Japan and became available in the U.S. in August 2017.
• Most ALS patients—even those under 65 years of age—qualify for Medicare, which covers the majority of services and equipment.
Initial signs of ALS become noticeable in different ways for different people. Symptoms tend to appear gradually and aren’t as obvious as you might think.
You might notice, for example, that something you used to do easily may take more effort or is harder than it once was. Muscle weakness is common with ALS.
If you become aware of changes to your body that concern you, do not ignore them. Talk with your doctor as soon as possible. Whether it is ALS or not, it is important to find out so that you can take appropriate action.
Just because you may be experiencing one or more common symptoms does not mean you have ALS. With that in mind, here are some typical early signs:
- Muscle weakness, atrophy, or twitching
- Fatigue in the arms or legs
- Difficulty walking, including tripping
- Weakness, clumsiness, or loss of dexterity in the hands
- Slurred speech
- Trouble swallowing or choking on liquids
- Neck weakness
- Periods of uncontrollable laughing or crying (less common)
This is not a comprehensive list of symptoms. The Muscular Dystrophy Association’s ALS Division provides more detail on inital signs and symptoms.
There is no one definitive test for diagnosing ALS. Doctors will need to run a series of tests in order to eliminate the possibilities of other diseases with similar symptoms.
The process of getting diagnosed can be frustrating. You can end up seeing multiple doctors, getting falsely diagnosed, and waiting longer than you would like.
The best way to get an accurate diagnosis as quickly as possible is to see a neurologist who specializes in ALS.
ALS affects both upper and lower motor neurons and is the most common motor neuron disease (MND). There are a few motor neuron diseases that are often grouped under the broad umbrella of ALS.
When we use the term “ALS,” we are also referring to the following MNDs:
▸ PLS (primary lateral sclerosis) affects the upper motor neurons. This does not mean, however, that it specifically affects the upper body. PLS symptoms tend to progress slowly, often affecting the legs first, then the trunk, then arms and hands, and finally speech and swallowing. Limbs can feel stiff and uncoordinated, and balance can be affected. People with PLS may be first diagnosed with ALS, and doctors may not know for a few years which one it is. A person with PLS can live 20 years or longer.
▸ PMA (progressive muscular atrophy) affects the lower motor neurons. This does not mean, however, that it specifically affects the lower body. With PMA, people tend to experience weakness in the hands before it spreads to the lower body, which can be affected severely. Trunk muscles and breathing may be affected. A person with PMA tends to live five to ten years after diagnosis. Some people initially diagnosed with PMA may find out years later that they actually have a case of slowly progressing ALS.
▸ Pseudobulbar palsy involves the brainstem and primarily affects the ability to speak, swallow, and chew. A person with pseudobulbar palsy may laugh or cry suddenly or involuntarily. Mild weakness in the limbs is often present as well.
The National Institutes of Health goes into greater detail on motor neuron diseases.