He was stuck in quicksand: Building knowledge about multiple sclerosis

Todd Small was stuck in quicksand again. It happened, as always, at the Seattle machine shop where he worked. His shift complete, Todd was making the 150-yard walk to his car, when he realized that his left leg was sinking deep in the stuff. This happened nearly every day now. His Nikes still looked normal, firmly planted on the concrete floor. But he was stuck. His brain was sending an electrical pulse saying "walk," but the signal snagged on scar tissue where the myelin layer of insulation for the nerve fibers had broken down because of his multiple sclerosis. He felt up to his waist in quicksand.

Doctors usually treat this with baclofen, a muscle relaxant. Every day for 14 years, Todd had taken a 10-milligram pill. He explained, "My neurologist always told me if you take too much it will weaken your muscles. So I never wanted to go over 10 milligrams." It didn't seem to have that much effect, but he carried on as best he could.

He would have continued just as he was had he not logged on, last June, to a web site called PatientsLikeMe. There, he listed his symptoms and treatments, including other medications. The web site revealed that 200 or so other patients like him were taking a range of doses of baclofen, up to 80 milligrams, and are doing fine. "So it hits me," he recalls, "I am not taking nearly enough of this drug."

A few days later, he asked his neurologist to raise the dose; now he takes 40 milligrams daily. While his foot drop isn't cured, he no longer feels he's sinking into quicksand while walking to his car.

There are more than 7,000 Todd Smalls at PatientsLikeMe, with diseases like MS, Parkinson's, and AIDS. Each one contributes his or her experiences, and quantifies their dosages and symptoms. All this is compiled over time into bar graphs and progress curves, and it's all open for comparison and analysis by the patients.

These are not typical patients. They are co-practitioners who are treating their conditions and guiding their care, with their doctors – with profound implications. "People who use it will live longer; those who don't, won't," says Jamie Heywood, the co-founder of PatientsLikeMe. "That's evolution."

Advice to people with MS, Parkinson's, and AIDS: Consider using PatientsLikeMe. Discuss what you learn there with your doctor.

Browse for related stories in the index at the very bottom of this page, or read a story on an MS hero.

Thanks to Thomas Goetz for the source article in today's New York Times Magazine.