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."
Clinical trials have demonstrated that a new drug, Novantrone, not only slows disease progression but also reduces disability. Doctors expect the government will soon approve it as an MS treatment.
The next advance, Kerr predicts, will be to restore brain function to MS patients by using stem cell technology. Although no such treatments are clinically available at present, many neurologists believe they will one day use neural stem cells to make brain cells replacing those MS patients have lost.
But there is still no way to predict when -- or even if -- attacks of the disease will occur. Disease symptoms not only vary greatly from person to person but also from episode to episode.
Talk-show host Montel Williams was recently diagnosed with "relapsing/remitting MS," the most common form of the disease. This type exhibits unpredictable attacks of MS symptoms followed by partial, or total, remissions for unknown periods of time.
Others experience a more progressive course of the disease with steadily worsening symptoms that may not go into remission.
Although MS is rarely life-threatening, it is often crippling. Statistics suggest that two out of three people with MS will remain able to walk, but that many will need a cane, walker or other assistance. Because MS creates heavy fatigue, patients like Rhonda Wilkinson conserve energy by using a wheelchair for such outings as shopping at the mall.
These days, the 44-year-old homemaker allows her husband, children and close friends to help with shopping and housekeeping chores. And she does not drive alone to places that are too far away for easy rescue.
In April, she had her worst relapse: The attack lasted for five weeks and took another five to turn around. The episode weakened Wilkinson to the point where she could hardly walk; she describes her fatigue as "the kind you feel coming out of major surgery."
One of the most important treatments for this disease, she says, is having the right kind of support. Wilkinson belongs to a group of women with MS who have become friends through a weekly aqua-aerobics class at Bel Air Athletic Club.
"Nobody can understand how you feel unless they've been there," says group member Pat Grahe. "When you say you're fatigued, the others can really understand what you mean. You can bounce opinions off one another."
Last week, Rhonda Wilkinson returned part time as a computer lab technician at Harford Community College. It was the first time she had been able to work since the relapse last spring. One of the worst aspects of the disease, she says, is how it attacks a person's sense of self-worth.
"I think MS can be as much a psychological as physical disease: You're always fighting how you feel about yourself," she says. "This disease has certainly changed the way I look at people who happen to have disabilities. It makes you realize that someone in a wheelchair is just using it to get somewhere, that that wheelchair is not who they are."
Before she got sick, Wilkinson planned to return to the medical research career she had put on hold in order to raise her family. Instead, she now checks the Internet every day for information on her own condition and emerging treatments.
"I've learned it's OK to have to change your goals," she says. "I've really been concentrating on staying positive and focusing on things you often take for granted."
MS seminars, groups, program
The Maryland chapter of the National Multiple Sclerosis Society is offering free seminars for people newly diagnosed with MS on Oct. 19 and 26. In addition, a program for women over 50 who have MS is set for Oct. 31. Three dozen MS support groups are listed in the chapter's bi-monthly newsletter. For details about programs and their locations, contact the society at 410-527-1770.
"Moving Forward," an hour-long Internet discussion program for people with MS, will present treatment options and symptom management at 8:30 p.m. Tuesday and a program on living with MS at 8:30 p.m. Sept. 28. To download the audio software necessary to participate, call the National Multiple Sclerosis Society at 800-344-4867 or visit the society's Web site (www.nmss.org).