Minerals |
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"The minerals I'm most interested in are calcium and magnesium, for several reasons," says McMichael. "People who have neuromuscular diseases and who are relatively inactive will have an increased risk of osteoporosis [fragile bones]. If you're standing up a good deal of the day, your bones do better than if you're not standing up.
"And if you're female, your risk of osteoporosis is substantial no matter what you do. So I think calcium is a good thing to take, and you should take magnesium along with it, because by loading up with calcium you may potentially induce some magnesium deficiency."
Calcium and magnesium taken together help regulate muscle activity.
"The only proviso about calcium is that people who form calcium kidney stones cannot take just any calcium preparation. They can take only calcium citrate, which has a lower risk of causing stone formation."
McMichael warns against taking calcium through bone meal, some of which comes from cattle that may have ingested lead.
Antioxidants and Neuromuscular Diseases |
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Free radicals are loose oxygen molecules that can cause damage to various cells in the body. Some scientists suspect that the body's inability to subdue these aberrant molecules in some cases could be contributing to ALS, Friedreich's ataxia, and various metabolic and mitochondrial disorders. However, no such connection has yet been proven.
Enzymes can serve as antioxidants, helping to sweep up unwanted free radicals, as can certain vitamins. Vitamins E, C, A, B2 (riboflavin) and B3 (niacin) are antioxidants, as are supplements coenzyme Q10, idebenone and the mineral selenium. Many foods such as green tea and leafy green vegetables provide antioxidant effects as well.
McMichael isn't convinced there's proof vitamin E can prolong survival of motor neurons in ALS by sweeping up free radicals. However, he doesn't think it's illogical to hope it has that effect.
"I think it's reasonable for people with ALS to take vitamin E and vitamin C," he says. "You should take them together, because the vitamin C will keep the vitamin E in active form. The vitamin E will detoxify free radicals, but in doing so it becomes deactivated, and you keep a higher amount of it in the active form by taking the vitamin C.
"How would you know if it helps or not? If it would slow the disease down 10 percent, you'd have a very hard time picking that up in any controlled study.
"Also, just because you have ALS doesn't mean you're not at risk for heart attack and cancer," he says. "Quite a few cardiologists would recommend taking vitamins E and C because of the beneficial effect on the heart and the coronary arteries."
Taking the Initiative |
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Richard Samuels, 51, lives in Mission Viejo, Calif. He has myotonic dystrophy (MMD) and for a number of months has been using products by a company called Integris. One is a vitamin supplement from rice bran and the other is a mineral supplement.
"They give me a feeling of well-being, make me relaxed and eliminate constipation, which is a big problem in myotonic," Samuels says. He also says his cholesterol levels have gone down since he began taking the supplements, which are approved by his doctor.
Samuels is one among a multitude of examples of people with neuromuscular disorders striking out on their own to get help from supplements.
"Patients are taking a lot of supplements, and are very much into educating themselves and exploring health care options," says Gelinas.
"Patients tend to go overboard," says Glenn Riese, an MDA program service coordinator in San Diego who talks with people who have neuromuscular diseases daily. He says he hasn't heard any miraculous accounts from them about positive effects from vitamins. He also says vitamin usage is particularly high in ALS.
"A lot of them are doing stuff on their own. We always bring up the fact that you have to be careful and be in contact with your doctor. But they say, 'What's it gonna do, kill me?' If there's a chance it'll make them feel better, they'll just go ahead and do it."
"ALS patients are the ones who are taking the creatine, the soy isoflavone, the ginseng," says Gelinas. "ALS patients network with each other probably more than any other group I've ever met. They do more experimentation. They're also more vulnerable to quackery."
She cites literal cases of ALS patients traveling to other countries to obtain the excrement of snakes as a supplement or seeking the warm blood of freshly killed deer to drink.
"These are just amazing things, born out of desperation. That's why you want to have the dialogue with them and let them know you're not opposed to holistic medicine. Otherwise they won't tell you what they're doing."
Open Dialogue |
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"You have to explain, when you first evaluate someone and are getting their history, that you're interested in anything they can tell you, whether it's prescription, nonprescription, even whose it is," says Stern. "People use other people's medicines and don't tell you about it."
"If I press patients hard enough, they'll come up with more stuff," says McMichael.
"Some people will come and show it to me. Then at least I have the potential to recognize those things that might be hazardous, although I can't guarantee I'll recognize everything that might be bad for you."
He says that vitamin preparations imported from other countries may contain substances such as ephedrine, which can make your blood pressure go up and your heart race. In such cases, vitamins and supplements are not safer than prescription drugs.
"If it causes you to have an arrhythmia or causes your blood pressure to go up or destroys your liver, that's bad," McMichael says. "How do you know what quality controls they have overseas? A large company in the United States is hopefully going to have better quality controls."
Gelinas places a lot of responsibility for communication on the physician.
"If they have a physician who's open-minded about the dialogue, then patients will share what they're on. If they have physicians who are autocratic, then patients won't tell them."
Gelinas adds, "I think the trend toward self-medication with vitamins and supplements is something that's being seen all over the country, because certainly my colleagues are noticing it. And I think that the more open and educated we are about it, the better we can take care of patients and the better we can test out these claims.
"We're in the age of information. Patients will get on the Internet and find out what other people are doing, so you might as well give them as much accurate information as possible, because on the Internet they'll get information that's accurate and inaccurate."
Good Information |
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A Web site, www.consumerlab.com, reports on testing of vitamins and supplements at independent laboratories across the country. It recently featured reports on calcium, creatine and vitamin C, and promises upcoming reports on multivitamins, coenzyme Q10, echinacea and vitamin E.
A Web retailer cited in Newsweek, vitacost.com, sells vitamins at wholesale prices and uses independent labs to screen products for quality.
The FDA administers a site at www.fda.gov/oc/buyonline that offers guidelines for buying drugs, vitamins and supplements on the Internet.  |
