Patient's Guide for ALS
A team of leading specialists from a variety of medical fields watches over Cedars-Sinai patients. Every member of the teams is dedicated to fighting amyotrophic lateral sclerosis. This multidisciplinary approach promises every patient gets the very best of care, every step of the way.
Frequently Asked Questions
ALS (Lou Gehrig's disease) is a progressive neurodegenerative disease that affects the nerve cells in the brain and the spinal cord that control muscle function, causing weakness and muscle atrophy. ALS also is known as Lou Gehrig's disease, in memory of the baseball Hall of Famer whose career ended in 1939 due to the condition.
In most cases, the cause of ALS is unknown. About 5 to 10 percent of cases are attributable to familial ALS (FALS), which is seen in families where two or more members have the condition.
ALS generally affects adults, with most patients diagnosed between the ages of 40 and 70. The disease is more common in men than women, although the distribution becomes more equal in older patients.
Currently, there is no cure for ALS. Scientists are researching genes to identify the ones that may be the cause of ALS. They are also looking at potential therapies to regenerate motor neurons that are affected by ALS.
Drug therapy, physical therapy, occupational therapy, respiratory therapy and speech therapy are available that can help ALS patients. Research trials are underway to identify ways to slow or stop the progression of the disease.
Because ALS affects many major functions of the body, a multidisciplinary team approach, such as the one employed by the ALS Program, can offer the best overall treatment. Cedars-Sinai has assembled some of the world's leading neurologists and other specialties to expedite diagnosis and create a comprehensive treatment plan individualized for each patient. In addition to skilled clinicians, Cedars-Sinai research scientists are making breakthroughs in genetic discoveries and developing new treatments to improve patients' quality of life.
You will need a physician referral to be admitted to Cedars-Sinai for inpatient medical care. Depending on your healthcare insurance, you may need a referral from your primary care physician before seeing one of Cedars-Sinai neurological specialists. Please call 1-800-CEDARS-1 (1-800-233-2771), or email firstname.lastname@example.org for more information. For information on reaching us from outside the United States, please contact our International Health Services team.
Appointments with the ALS multidisciplinary team generally last for three to four hours. During this time you can expect to see a neurologist, the team pulmonologist as well as some or all of the following team members: physical therapist, occupational therapist, speech and language therapist, registered dietitian, neuropsychologist, genetic counselor, research coordinator and a social worker.
Here’s what you can do to make the most of your appointment time:
- Write down and bring any questions about their condition or treatment.
- Keep a record of symptoms, including any changes, and if the symptoms are affecting their work or personal life.
- Bring a list of their current medications.
- Bring prior medical records if the patient is transferring from a medical provider outside of the Cedars-Sinai Medical Center.
- Fill out any required paperwork in advance including medical record release authorization forms, referral request forms, patient intake form, and the patient privacy form.
Some patients may undergo an electromyography (EMG) and/or nerve conduction study. Blood tests may be ordered as part of a clinical work up or for research. No preparation is necessary. However, you should be well hydrated.
Yes, we always encourage patients to bring a spouse, family member or close friend with them to their appointments.
Neuroscience experts at Cedars-Sinai are working to use their clinical experience and research knowledge to lead the way in finding new treatments, techniques and diagnostic procedures. Our ongoing clinical trials are open to all eligible participants, and patients are encouraged to pursue involvement. General information about participation in clinical trials at Cedars-Sinai can be found in our Patient and Visitors Guide.
Information on publications by our expert neurosciences team can be found at PubMed.gov.