MS a mysterious, unpredictable disease

Health: Scientists and physicians still don't know much about multiple sclerosis.

September 12, 1999|By Linell Smith | Linell Smith,Sun Staff

It started 13 years ago with the most routine kind of ache: Rhonda Wilkinson awoke one morning to find her left arm tingling. Up most of the night with a sick toddler, she figured she had just slept on her arm funny.

During the day, however, the pins and needles sensation persisted. And so did her difficulty swallowing. For two weeks, the 31-year-old mother had felt as if she had a lump in her throat. Maybe these ailments had something to do with the virus her entire family was battling, she reasoned.

By the next day, however, Wilkinson's entire left side tingled, from head to foot. Her physician sent her for a CAT scan to rule out such a life-threatening condition as a stroke or brain tumor.

When the results came back negative, Wilkinson was told she had damaged a nerve in her shoulder. Gradually, her symptoms subsided. Intermittently, they would flare up again, but to a lesser degree.

Then, four years later, she began to have trouble walking. A new doctor, reviewing her medical charts, suggested Wilkinson might have multiple sclerosis, a chronic disease that attacks the body's nervous system in unpredictable ways.

Although further tests also came back normal, Wilkinson began to suspect she might harbor the debilitating disease.

Two years ago, at a soccer game near her home in Bel Air, her arms and legs suddenly went numb. She had also been having trouble walking again. She slowly made her way into the shade to escape from the searing August sun. At this point, she knew enough about MS to realize that heat was a classic trigger for the disease's symptom flare-ups.

Further tests confirmed the worst. Rhonda Wilkinson, mother of three teen-agers, had contracted multiple sclerosis, a disease which physicians did not yet understand, much less know how to cure.

She had contracted a highly unpredictable disease which, at its best, could give her occasional trouble. At its worst, it could paralyze her ... or make her go blind.

While she was still leading a normal, productive life, Wilkinson felt devastated by the news.

"Although many people do not become disabled, there's always the fear: 'Gee, I could wind up that way.' The perceived life change is profound," says nurse-practitioner Kathleen Costello, clinical director of the Maryland Center for Multiple Sclerosis at the University of Maryland School of Medicine. "I think the diagnosis creates a lot of anxiety. ... You're fearing what you don't know -- and even the best experts you talk to can't make concrete predictions [about the course of the disease]."

A disease that affects roughly 330,000 Americans, multiple sclerosis is caused by an immune system reaction that may originate from a combination of environmental factors and genetic susceptibility.

The disease causes the body to break down myelin, the fatty substance that surrounds and protects the nerve fibers of the brain and spinal cord. Destroying myelin can interrupt and distort nerve impulses traveling to and from the brain.

(The condition's name comes from its tendency to attack many areas of the brain and spinal cord and from the scar tissue, or sclerosis, it creates at the damaged sites.)

Although MS is unpredictable, researchers know it affects twice as many women as men and twice as many whites as those of other races. It rarely attacks people living in tropical climates. Studies suggest that genetic factors may make certain people susceptible to MS, but there is no evidence that it is directly inherited.

Most people are diagnosed with MS between the ages of 20 and 40. Symptoms of the disease include tingling, numbness, slurred speech, blurred or doubled vision, muscle weakness, poor coordination, unusual fatigue, muscle tightness or spasticity, problems with bladder, bowel or sexual function, and paralysis. Some patients become forgetful, have difficulty concentrating and are prone to mood swings.

No single test exists to confirm, or rule out, MS. A definitive diagnosis, which can sometimes take years, depends upon detecting patches of scar tissue in different parts of the central nervous system and upon recording at least two separate episodes of disease flare up.

Recently physicians have begun to use a new generation of interferon drugs designed to ward off MS relapses; studies show the drugs Avonex, Betaseron and Copaxone can slow progression of the disease. (While patients are suffering attacks, they are often treated with steroids.)

Because new research suggests the disease destroys nerve cells as well as their protective coating, most MS physicians now treat their patients with one of the "ABC" drugs as soon as there is a clear diagnosis, says Johns Hopkins neurologist Douglas Kerr.

Injury to nerve cells is irreparable, "But if we can aggressively quiet down the immune system early on, we think we can minimize the damage."

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