By Jennifer Barrett
    Newsweek

    Tuesday 14 March 2006

New treatments are giving new hope to patients with multiple sclerosis.

    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.

    Procedures like spinal taps, in which fluid is removed from the spine and tested for white blood cells and other substances that might indicate MS, have made earlier detection and treatment possible. Most patients learn they have the disease between the ages of 20 and 40, but more people are being diagnosed in their teens - or even earlier now. Between 2.5 and 5 percent of the total MS population is under the age of 15, says Cohen.

    While new treatments still don't cure the disease, they are able to slow its progression and relieve the symptoms. Roehrich takes Betaseron, which was the first therapy approved in the United States 13 years ago to treat the most common form of MS. It requires an injection every other day, but he says it's become as habitual as brushing his teeth. Now 24, Roehrich says that, except for an occasional twitch in his eye or numbness, he is "virtually symptom free."

    Other drugs have since been approved - although not without some problems. Injections of Avonex, Rebif, and Copaxone reduce the frequency and severity of MS attacks by suppressing the immune system. (In cases of MS, patients' immune systems turn against their own bodies, attacking nerve cells in the brain and spinal cord.) These drugs help limit the damage to the nerve cells. In addition, there's evidence that Avonex and Rebif may actually slow down the progression of physical disabilities. Another drug, Novantrone, has also been approved for people with a rapidly worsening form of MS. A chemotherapy drug, it's given intravenously and also helps to suppress the immune system so it stops attacking the cells. The drug may reduce new damage in the nerve cells; decrease relapses (or new attacks); and slow down the rate of disability. But it is not recommended for long-term use because heart damage is a potential side effect.

    In late 2004, the FDA also approved a drug called Tysabri, an intravenous drug that's given every four weeks. When it was compared to a placebo, Tysabri - which works by blocking immune cells that can cause inflammation or neural damage when entering the brain and spinal cord - reduced the number of MS attacks in patients by up to 68 percent over a one-year trial. "After we saw that, we realized that stopping the disease cold may be in our grasp," says Dr. John R. Richert, vice president of research and clinical programs at the National MS Society. But then three trial participants contracted a rare brain disease; two of them died. Drug manufacturer, Biogen Idec, voluntarily withdrew the medication in February last year. Last week, though, a scientific advisory panel to the FDA unanimously recommended that the drug be brought back to the market. (The agency has not yet ruled, but it generally follows the recommendation of the advisory panel). Though Richert is optimistic about the drug's potential, he cautions, "The big issue remains: can we manage Tysabri without too much risk?"

    Regardless, Richert and other doctors who specialize in the disease say new treatments are giving hope that they may be closer to finding a cure for the disease - not just treatments to slow its progression. In the meantime, patients like Roehrich are proof that MS patients can enjoy a good quality of life. Two years ago, a friend tattooed the word "UNBROKEN" on his right arm. He looks at it in the mirror every morning. "That word just resonated with me," says Roehrich, who is one of 27 people featured in a new photo exhibit on MS. "It's about not feeling victimized or that my life has been compromised. MS is a facet of who I am, but it doesn't define me."