Reviewed By Michael Smith, MD

By Gina Shaw
WebMD Feature

It took three years for Michele Maglione to be diagnosed with multiple sclerosis (MS).

Her first attack came in 1988, when she experienced a frightening bout of numbness from the waist down. She assumed she had a slipped disk or pinched nerve from a recent move. Her doctor sent her to a neurologist, who told her she had a ruptured disk and sent her to physical therapy. After a few months the numbness receded. Maglione, then 30 and in an active career with a New York City nonprofit, put it out of her mind.

But the symptoms returned with a vengeance three years later, when she was visiting friends overseas. "My right arm and my left leg went numb," she recalls. Returning home, she found a different neurologist, who officially diagnosed her with multiple sclerosis in June 2001. One month later, she began regular treatment with a new disease-modifying drug that's been shown to slow progression of MS.

A Fortunate Diagnosis

Amazingly, Maglione feels lucky. "Between the time of my diagnosis and when I got on the medication, I had started to lose my peripheral vision," she says. "That, to me, was even more scary than the other physical symptoms I was going through."

After two months of treatment, she got her peripheral vision back, and some of her other symptoms subsided. She still has some symptoms -- like tingling in her left hand -- but she knows it could have been much worse if her diagnosis had been missed for much longer.

Not long ago, it wouldn't have made much difference whether Maglione was diagnosed with MS early or later in the course of the disease. "We didn't have a treatment, and theoretically there could be insurance and job implications," recalls Patricia Coyle, MD, professor of neurology at the State University of New York at Stony Brook and director of the Stony Brook MS Comprehensive Care Center.

But today, that's all changed. Experts now agree that disease-modifying drugs for MS, which include Avonex, Betaseron, Copaxone, Novantrone, and Rebif, offer the best chance of holding the disease at bay when started early. In fact, the latest research indicates that it may be more protective to start drug treatment right after the first "clinically isolated syndrome" occurs -- even though multiple sclerosis can't be officially diagnosed until you've had two attacks.

What's a Clinically Isolated Syndrome?

A "clinically isolated syndrome" or CIS, Coyle explains, can be thought of as the "first attack" of multiple sclerosis. It's a single clinical event that points to demyelination -- the loss of the protective substance in the brain or spinal cord that insulates nerve endings. For example, an attack of optic neuritis in one eye, or an episode of numbness on one side, would count as a clinically isolated syndrome.

A CIS is usually unaccompanied by any other clinical sign or symptom, and like Maglione, you may imagine many other possible explanations for your numb right arm or vision problems. But if your doctor rules out other syndromes and also finds certain abnormalities in your brain MRI, a CIS should spur you to talk to your doctor about treatment with an MS drug, says Coyle.

The Benefits of Early MS Treatment

Research has shown that young adults who've had one clinically isolated syndrome, and who have a certain kind of abnormal brain MRI, may be at very high risk of developing MS, says Coyle. "And in that group, three independent, major phase III clinical trials have all shown that people do better if they're treated with an MS drug as opposed to a placebo." These studies, which involved the drugs Avonex, Betaseron, and Rebif, found that each drug delayed the onset of full MS in people who had experienced their first attack. Studies to find out just how long this protective effect lasts are still ongoing.

When a person with multiple sclerosis has a first clinically isolated syndrome -- like Maglione's numbness in 2001 -- the disease has already been attacking the brain for some time. John Richert, MD, vice president for research and programs with the National Multiple Sclerosis Society, compares the process to a locomotive rolling downhill. "Once the autoimmune response starts, it's almost like a train going over the top of a hill. You'll have a much easier time slowing it down early in its course than later on, when the momentum starts to get out of control," he says.

Putting the Brakes on MS

Even though she didn't get treatment until three years after her first attack, Maglione believes that starting on a disease-modifying drug for multiple sclerosis as early as she did has put the brakes on her out-of-control MS locomotive, at least for now. "I haven't had full-blown flare-up since I went on medication. And there have been no new lesions on my MRI over the past two years," she says. "That's the best I can hope for, is that it's doing what it's supposed to be doing, slowing down the disease and keeping the attacks at bay."

Multiple sclerosis hasn't slowed Maglione down. Today, she works as the vice president of communications for the New York chapter of the Multiple Sclerosis Society, and participates in fundraising events, organizing an MS Walk team, and even swimming three miles across the Hudson River to raise money for MS research and programs.

"I remember what it felt like to first be diagnosed, how devastating it was. But if there's ever a time when it's actually 'lucky' to be diagnosed with MS, this is it. We have so many disease-modifying drugs available to us. There are more on the horizon, and they know a lot more than they knew even 10 years ago," she says. "There's a lot that doctors can do to keep our disease at bay, but we as people with MS have to be part of the solution."

Published Jan. 9, 2006.

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SOURCES: Patricia Coyle, MD, professor of neurology and director, Stony Brook Comprehensive MS Center, Stony Brook, NY. Michele Maglione, vice president for communications, Multiple Sclerosis Society New York Chapter, New York City. National Multiple Sclerosis Society, New York City. John Richert, MD, vice president of research and programs, National Multiple Sclerosis Society, New York City.