Objectives: Alternative medicine is widely used in all industrialized Western countries. However, there are no published data regarding the use of botanical or herbal supplements in Ayotrophic Lateral Sclerosis (ALS). Our goal was to survey patients with ALS in our clinic regarding their use of herbal supplements, vitamins, and other therapies or compounds.
Methods: Study subjects participated in the University of Utah Motor Neuron Disease Clinic. An anonymous questionnaire was mailed and designed to assess the following: disease duration and onset site, use of riluzole, alternative therapies (i.e., homeopathy, acupuncture), vitamins, herbal supplements, and other compounds, sources of information about herbal supplements or vitamins, estimated monthly expenditure on vitamins, herbal supplements, and other compounds, and expectations from herbal supplements/vitamins.
Results: Fifty-three subjects participated; mean age 60 years old (range 39-83 years), 15 females, 38 males. Symptom duration averaged 1-5 years (45 limb onset, 8 bulbar onset). Thirty-two percent took riluzole and 42% used herbal supplements, 70% took vitamins, and 21% used other compounds (prescription medications used for ALS, but not indicated for ALS). Fifteen percent used alternative therapies. Information about herbal medicines was obtained mostly via friends and relatives (n = 17), a physician (n = 20), and the Internet (n = 9). Our patients selected improvement of general well being and slowing of disease progression most often as reasons for using these therapies.
Conclusions: Our study demonstrated that almost half of patients surveyed utilized herbals supplements, and two thirds of ALS study subjects took vitamins. Twenty-one percent used unproven prescription drugs, and 15% used other alternative therapies.