'I’m Not a Sick Person'

One summer morning, about to enter his junior year in college, Greg Roehrich woke up with a tingling feeling in his left foot. Initially, he dismissed it as a case of “pins and needles.” But by the next morning, the sensation had spread to just below his knee. Within two weeks, the entire left side of his body and the right side of his face were numb. “I remember picking up an ice cube and watching it melt in my hand,” says Roehrich, who lives in Ringwood, N.J. “I didn’t feel a thing.”

Roehrich’s doctor ruled out Lyme disease and other possibilities, but couldn’t come up with a diagnosis for the 20-year-old student. When the numbness persisted for weeks, Roehrich went to a neurologist who took an MRI of his brain and a spinal tap. The diagnosis: multiple sclerosis (MS). After a tearful discussion with his mother, Roehrich remembers plugging the term into Google so he could learn more about it. “It was pretty devastating to find out I have a chronic disease that I know nothing about,” he says.

The little he’d heard about it wasn’t good. “A lot of people associate the disease with people in walkers and wheelchairs,” he says. But, as he learned, that’s no longer the case for many patients.

The condition is not fatal. But for a long time, there was no treatment for it and many patients were eventually forced to use a wheelchair. In the last decade, though, at least half-a-dozen drugs have been approved that have helped many like Roehrich enjoy a relatively normal life. “I tell people I have MS and they expect to see a sick person—and that’s not who I am,” says Roehrich, a longtime Tae Kwon Do practitioner who has been touring as a guitar player in a rock band since he graduated from college in 2003 with a computer engineering degree.

“That’s an issue we encounter every time we give a diagnosis,” says Dr. Bruce Cohen, a neurology professor at Northwestern’s Feinberg School of Medicine and director and co-founder of the Northwestern Comprehensive Multiple Sclerosis Program. “But in fact many patients are essentially continuing to live normal lives. They aren’t going to tell people they have MS because they want to be treated and to live like everyone else—and, today, many of them are.”

At least 400,000 Americans have the neurological disease, according to the National Multiple Sclerosis Society, but that’s still a small sliver of the total population. And there’s no “typical” patient. Multiple sclerosis—so named because the disease results in multiple scars (or scleroses) on the myelin sheath, which surrounds the body’s neurons—affects the body’s central nervous system. Symptoms and severity vary widely: from blurred vision to slurred speech to poor coordination and, in the worst cases, paralysis. “No two cases are alike and, if that’s not bad enough, it’s different day-to-day for each person. That makes it really complicated,” says Dr. Randall T. Schapiro, founder of the Schapiro Center for MS at the University of Minnesota.