The information provided in this web site is intended to educate the reader about certain medical conditions and certain possible treatments. It is not a substitute for examination, diagnosis, and medical care provided by a licensed and qualified health professional. If you believe you, suffer from the conditions described herein, please see your health care provider. Do not attempt to treat yourself or anyone else without proper medical supervision.
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Ask the Specialists
Who gets ALS and why?
There are two broad categories of ALS - sporadic (sALS, essentially of unknown cause) and familial (fALS, with a direct genetic linkage). fALS cases are typically identified by examining the medical history of ancestry with typical fALS, affecting approximately half the members of the family tree.
Several specific genes have been linked to the inherited disease, which is estimated to be between 10 - 20% of all cases. To date, epidemiological studies have not consistently identified clear causative agents for the remaining 80 - 90% of sporadic disease. ALS seems to affect males and females at the same rate and there have been no indications that prevalence is higher based on ethnicity or other demographic variable. While the average age of onset is about 50 years old, cases are not uncommon in adults as young as 18 and as old as 80.
How is ALS diagnosed?
At present there is no definitive means of diagnosis of ALS/MND. Most diagnoses are made by eliminating all other possibilities - ailments whose symptoms resemble those of ALS/MND. Neurologists use a number of clinical tests to establish a profile, including blood testing, EMG, MRI, et cetera.
How does the disease start, and is progression constant?
There is considerable variation in the natural history of the disease across patients but many patients observe initial symptoms in a specific muscle group such as the thumb or the disease may manifest as 'foot drop', etc. This initial muscle weakness will, with varying progression, typically spread laterally (to the opposite limb) or vertically, affecting muscles on the same side. Symptom initiation in the chest or neck/mouth is often referred to as ‘bulbar onset’. Progression rates vary across individuals and have been reported in some cases to alter within individuals as the disease progresses.
Is there a treatment for ALS?
Currently, there is no effective therapy approved for use by the health authorities that has been identified to stop the disease's progression or prevent onset. Rilutek is a drug that has been approved for use in the treatment of ALS; however it offers a very modest effect that has usually been described as a three-month life extension.
The effectiveness of Rilutek varies from patient to patient and all medical treatment decisions should be made in careful consultation with one's physician or other qualified medical professional charged with their care.
Where can I find information on clinical trials?
The National Institutes of Health, a United States government agency, has a list of clinical trials. Go to the "ClinicalTrials" web site http://www.clinicaltrials.gov to find a list of federally and privately supported clinical trials in the United States and around the world. ClinicalTrials.gov gives you information about a trial's purpose, who may take part, locations, and phone numbers for more details.
Use the “ALS Clinical Trials” web link http://www.clinicaltrials.gov/ct2/results?term=amyotrophic+lateral+sclerosis for clinical trials specifically related to ALS.
