Amyotrophic Lateral Sclerosis (ALS)
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Links
ALS Center
This ALS Center homepage offers basic ALS information, as well as information on the Medical Center’s clinic, research, support groups and related departments, as well as links to number other ALS Web sites such as the World Federation of Neurology and a Survival Guide done by an ALS patient.
ALS Association
The ALS Association offers a variety of information on this Web site including pages on the ALS community, research, physicians, the latest news and an ALSA store.
Department of Neurosurgery
This page from the Department of Neurosurgery provides links to various related diseases and conditions.
NINDS
The National Institute of Neurological Disorders and Stroke offers a patient guide to disorders that are listed on this Web page alphabetically under the heading of publications. Information on amyotrophic lateral sclerosis (ALS) is available in the alphabetical directory. This Web site also has information for professionals.
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Definition
Amyotrophic lateral sclerosis (ALS), commonly known as Lou Gehrig’s disease, is a progressive neuromuscular disease in which muscle function is lost because the nerve cells in the brain and spinal cord are destroyed. ALS affects upper and lower motor neurons, which are the nerve cells that control voluntary movements of the throat, tongue, arms and legs.
Because no messages are coming to the muscles, they eventually atrophy and waste away. ALS does not affect the intellect, senses, heart or bowel/bladder functions.
Typically, symptoms begin to appear between the ages of 40 and 70, although ALS can develop earlier. Men are more likely to get ALS than women.
About 5,000 people are diagnosed each year with ALS. The cause of ALS is not known, and there is no cure. About 20 percent of ALS patients live longer than five years and 10 percent longer than 10 years.
Symptoms
Symptoms often begin with muscle weakness, particularly in the extremities. They can include muscle atrophy, a loss of coordination, arm or leg fatigue, muscle cramping or twitching, slurred speech and periods of uncontrollable laughing or crying.
Early problems may be detected in one limb, such as hands or feet and move to the arms and legs and eventually to the trunk, interfering with breathing and eating.
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Diagnosis
No single test can establish a diagnosis of ALS. But specific tests are performed to rule out other diseases. A patient’s overall neurological function is evaluated, looking at muscle strength, reflexes, sensation, walking, speech, swallowing and other functions.
Diagnostic testing may include the following: electromyography (EMG) to measure muscle response, nerve conduction studies to measure the integrity of the nerves, magnetic resonance imaging (MRI) to image the brain or spinal cord, blood studies to eliminate other diseases that mimic ALS and nerve and/or muscle biopsy to remove a sample of a nerve or muscle for pathological analysis.
Treatment
The goal in treating an ALS patient is to maintain functional independence and preserve quality of life.
Rilutek (Riluzole) is the only FDA-approved medication for ALS. The drug appears to prolong an ALS patient’s life up to nine months longer.
Other medications and treatments can be prescribed to minimize symptoms commonly encountered by ALS patients, such as muscle cramps, spasticity, excess saliva, uncontrollable laughing or crying, depression, constipation, insomnia, anxiety and weight loss.
In addition, various therapies, rehabilitation, use of appliances and orthopedic intervention may be part of a treatment program.
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Research
Extensive research is underway for the treatment and cure of ALS.
The Amyotrophic Lateral Sclerosis Association recently announced a new $25 million cure-directed research initiative over the next five years. This initiative will include identifying new genes involved in familial ALS, using information from the DNA sequence of the human genome to aid in genetic studies and looking at stem-cell research as potential for replacing dying neurons.
Other research involves studies of drugs that could possibly one day slow down the progression of ALS. One possibility might be using a group of drugs, similar to the strategy used to treat HIV infection to prolong the lives of ALS patients.
WFUBMC Approach
In 1998, WFUBMC established the ALS Clinic to offer patients a comprehensive approach using a multidisciplinary team of physicians, nurses and therapists.
The team includes professionals from Neurology, CompRehab, the N.C. Assistive Technology Project and other departments, as well as recreational, speech, occupational, physical and respiratory therapists, dieticians, social workers, psychologists, chaplains and volunteers.
The clinic is held once a month. The Northwest Piedmont Support Group works with the ALS Center to help patients, their family members and friends. The ALS Clinic collects data for the ALS Patient Care Database, a component of the ALS C.A.R.E. Program.
At the Medical Center, research includes experimental drug trials as well as studies on the natural history and complications of the illness.
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