Results of a recent clinical trial suggest that vitamin E may cause a slight delay in the progression of ALS— bittersweet news for people who've followed the hopeful treatment's long history.

In the trial, led by neurologist Claude Desnuelle at CHU de Nice Hospital in France, 289 people with ALS received either vitamin E (500 milligrams) or a placebo twice daily for one year. All trial participants were also taking riluzole (Rilutek).

In a nine-month study of six people with ALS conducted at the Eleanor & Lou Gehrig MDA/ALS Center at Columbia-Presbyterian Medical Center in New York, investigators found that high-dose, orally administered coenzyme Q10 might be beneficial in preserving motor units in the disease. Because of the positive trends, researchers are planning a larger study.

MDA/ALS Center Director recommends better planning

Using a noninvasive ventilation device in ALS may actually weaken respiratory muscles faster than not using one, a preliminary study in the March issue of Muscle & Nerve suggests. On the other hand, the use of such devices was found by the researchers to relieve fatigue, to promote a sense of mastery over the illness, and even to prolong survival.

Starting Jan. 2, augmentative and alternative communication (AAC) devices that generate speech for people with limited vocal ability will be considered durable medical equipment eligible for coverage by Medicare.

Under previous guidelines, speech generators and synthesizers and their accessories have been considered convenience items. A speech system can cost up to several thousand dollars.

When news of Jeff Hilliard's ALS diagnosis spread throughout his St. Louis community, friends responded with an outpouring of home-cooked meals, sympathy and offers of "what can we do to help?"

Hilliard, 39, and his wife, Diana Wagner-Hilliard, knew they would need help as they coped with Jeff's rapidly progressing ALS symptoms. The pair, both attorneys, was already kept hopping with demanding careers and three children: Danielle, 7, Abigail, 5, and Andrew, 6 months.

Edward Sivak

Edward Sivak is a professor of medicine and a pulmonologist associated with the MDA/ALS Center at the State University of New York in Syracuse.

Robert McMichael is a neurologist at Neurology Associates of Arlington, Texas, where he directs the MDA clinic. McMichael, who was profiled in Quest, vol. 6, no. 2, has limb-girdle muscular dystrophy and 16 years of experience in treating people with neuromuscular disorders, including ALS.

Q: What is a feeding tube? Why does it have so many confusing names?

Mistakes in diagnosing ALS are rare these days, but they do occur. One disease that's sometimes confused with ALS is SBMA, or spinal-bulbar muscular atrophy, also known as Kennedy's disease.

SBMA is a form of motor neuron disease that can mimic ALS. Many of the symptoms are the same. SBMA causes weakness, particularly in the hip and shoulder muscles, with muscle atrophy and twitching (fasciculations). SBMA patients often have muscle cramps, and they may have difficulty swallowing.