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With few FDA-approved drugs available for ALS, some people look for alternative treatments that could cure, reverse, or slow progression of the disease. These off-label treatments can come in the form of special diets, dietary supplements with vitamins, minerals, and herbs, or therapies such as acupuncture and energy healing.
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Some alternative treatments have shown some promise in clinical trials. The majority of supplements that are advertised on the internet, however, do not have any hard evidence to back up claims that they are safe, effective, or clinically proven.
Unlike prescription drugs, which must undergo a rigorous approval process, natural supplements in the United States are not regulated by the Food and Drug Administration (FDA). There are very few requirements in place to ensure the safety or quality of these alternative options.
Unlike prescription drugs, which must undergo a rigorous approval process, natural supplements in the United States are not regulated by the Food and Drug Administration (FDA). There are very few requirements in place to ensure the safety or quality of these alternative options.
A word of caution
Unfortunately, there are some bad actors online who market unproven miracle cures to profit from people who are desperate to improve their conditions. Some people living with ALS have spent a lot of money on unproven alternative treatments that never yielded results. Some have even been physically harmed by unregulated alternative treatments.
So, if you hear about a special product or procedure that sounds too good to be true, it probably is. Be sure to do your research, and always consult with your neurologist, ALS clinic, or medical team before pursuing any alternative treatments.
So, if you hear about a special product or procedure that sounds too good to be true, it probably is. Be sure to do your research, and always consult with your neurologist, ALS clinic, or medical team before pursuing any alternative treatments.
How to make informed decisions
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Fortunately, there is a website that can help you make sense of alternative/off-label treatment options for ALS.
On www.ALSUntangled.com, Duke ALS Clinic neurologist Dr. Richard Bedlack and over 100 clinicians and scientists from around the world objectively review and assign letter grades to alternative treatments that are of interest to people living with ALS. Dozens of completed reviews can help you see which alternative treatments show the most promise. |
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