Frequently Asked Questions About ALS
Who gets ALS?
ALS is an “equal opportunity” disease, affecting both men and women of all races, religions and ethnicities. Worldwide, there are 1 to 2 cases of ALS per 100,000 population. While the most cases occur in people between the ages of 40 and 70, the disease can occur in people in the 20’s, all the way up to their 90’s.
How is ALS diagnosed?
There is no single test to diagnose ALS. Instead, it must be diagnosed by ruling out all other possible causes of symptoms. For this reason, diagnosis can take months, or in some cases, years.
A positive diagnosis should come from a neurologist specializing in motor neuron diseases. It is confirmed by a positive EMG, and negative results from other tests, including blood work, MRIs, and CAT scans. Patients should also exhibit a history of progression of symptoms.
What are the symptoms?
ALS presents itself differently in every patient. Common early symptoms can include a weakness in the arms, hands, legs or feet that worsens over time. In some cases, muscle weakness can start in the speaking, chewing and swallowing muscles otherwise known as the "bulbar" muscles. People who have ALS with an onset of symptoms in the bulbar muscles usually report a change in voice quality and tone, and/or difficulty with chewing and swallowing food.
As it runs it course, ALS will eventually affect muscles in the arms and hands, legs and feet, chest, abdomen, back, neck, throat and mouth, tongue, face, and diaphragm.
ALS does not affect internal organs like the heart, liver, kidneys or lungs, sexual function, or the senses.
What treatments are available?
There is only one medication approved by the FDA for treatment of ALS. Riluzole, manufactured under the brand name Rilutek, is thought to extend life in ALS patients by about three months. ALS care is predominantly palliative, meaning that we strive to help patients manage their symptoms.
Is ALS hereditary?
Between 5 and 10 percent of the cases are familial, meaning there is a genetic component. That leaves between 90 and 95 percent of the cases which are considered sporadic. In cases of sporadic ALS, researchers do not know what causes the disease.