People with ALS don’t improve. It’s one of the hallmarks of the disease, indeed of any neurodegenerative disorder. Although symptoms might improve temporarily, the general trajectory remains constant over time. Over the years, Duke neurologist Richard Bedlack former Packard scientist, has seen thousands of ALS patients, and they’ve all followed the same pattern. Every now and then, however, one patient seems to defy those odds, showing significant improvement after their ALS diagnosis. Either these patients never really had ALS to begin with, or something very unusual is going on.
Bedlack is spearheading an effort to determine which of these is true. Although he says it’s more than possible some cases of ALS improvements may have been misdiagnoses, the possibility that these individuals could ultimately crack the mystery of ALS is too exciting to turn down. So Bedlack is now on the hunt for the rarest of rare: those people with ALS that seem, somehow, to get better.
The Duke neurologist has a long history of approaching ALS with an open mind and a desire to investigate phenomena that others might write off as mere happenstance. His well-known ventures into what he calls the “dark corners of the Internet” have earned him the nickname of the Fox Mulder of ALS, after the X-Files detective.
Take the widely practiced but rarely discussed phenomenon of patient self-experimentation, whereby patients try a variety of over-the-counter or alternative treatments to see whether they might improve their symptoms. Bedlack felt it was his duty as a physician to investigate and evaluate these treatments, a process that he found himself repeating with patient after patient, and knew that other physicians were having the same issue. So he created the ALS Untangled project, funded in part by the Packard Center, that would create a central location where patients and physicians could submit their suggestions for treatments they had read about or had tried. In exchange, Bedlack and a team of ALS specialists would investigate the claims and publish their findings in an open access journal. This would give both patients and doctors the ability to better evaluate these alternative treatments. Most of them, Bedlack admits, were a bust. But a few, such as the use of coconut oil, seemed to help, at least somewhat.
excerpt © 2016 The Robert Packard Center for ALS Research at Johns Hopkins. All rights reserved.