For decades, people with multiple sclerosis were discouraged from exercising to avoid the severe fatigue, vision loss and balance problems often caused by increased body heat.

But experts now say MS patients can and should be active — as long as they stay cool.

“Thirty years ago there were doctors who said it’s better for people with multiple sclerosis to avoid exercise,” said Dr. Ted Brown of the MS Hub Medical Group in Seattle. “That’s just really turned around 180 degrees.”

Excess body heat and multiple sclerosis can be a toxic duo. For more than a century, doctors have logged new symptoms in their patients with multiple sclerosis on hot days or after a strenuous work out.

The connection between flare-ups and body heat was so clear that, until the 1980s, doctors used their patients’ reactions to hot baths to close in on an MS diagnosis.

Multiple sclerosis causes a deterioration of myelin, an insulating cover for nerve cells that helps transmit signals from the central nervous system. Without myelin, the signals are blocked, leaving some areas of the body useless.

Experts believe increased body temperature exacerbates the misfiring of those signals. It remains unclear, however, why heat triggers symptoms in up to 90 percent of people with MS.

Still, they say, exercise is too valuable to skip.

Physical activity strengthens weakened muscles and builds endurance in patients with MS. It might also ease or stave off depression.

Sean Winters reserves his hardest workouts at the Bellevue Highland Community Center — where the machines are designed for people in wheelchairs — for cold winter days, when returning to a hot car isn’t an issue.

“In a hot car, waiting for the air conditioning, lots of times you just kind of hit a wall,” said Winters, 32. “Obviously, I don’t want to feel like that before I drive home.”

Symptoms related to heat sensitivity typically recede and disappear altogether after a few hours, but some people tested in hot baths had persistent problems, leading doctors to stop using this technique.

Simple remedies, like drinking cold water, eating ice chips, wearing loose clothing and taking a cool bath before working out can minimize or prevent heat sensitivity, doctors say.

Roanne Dunbar, 66, swears by the one-on-one Pilates sessions she’s attended three days a week for six years.

An exhibition diver and water skier as a young woman, Dunbar now has to temper her more active tendencies. Pilates allows her to remain limber and strong, without overheating. On warm days, she places an ice pack around her neck to prevent fatigue.

“I do pretty much everything I want to do,” said Dunbar, who wears a brace on her weakened right leg. “I just do it more slowly and cautiously.

“I just can’t go fishing where it’s terribly hot, but I still tromp around in Alaska and northern British Columbia. My husband and I love fly fishing.”

At the University of Washington, doctors are studying the effect of exercise on depression in people with multiple sclerosis. Rates of depression are about three times higher among those with MS than in the general population. But MS patients don’t respond as well to antidepressants.

UW researchers hope their work will motivate physicians to tell their multiple sclerosis patients that exercise could help with their depression.

According to a recent UW survey of 739 people with MS in King County, 86 percent said they wanted to learn how to exercise safely.

“It’s something that doesn’t have to cost a lot or be a lot of extra work for physicians,” said Dawn Ehde, a psychologist at the UW.

After his MS diagnosis in 1993, Ken Nashif transformed the tennis court in his Lynnwood back yard into18 raised garden beds. The produce he grows is so plentiful, he donates much of it to a food bank.

“I try to stay as active as I possibly can,” said Nashif, who had to leave his job as a marine engineer because spending time in the ship’s hot engine room brought on attacks.

“I’m a die-hard gardener. I go out at 5 a.m., when it’s still nice and cool. It’s the best part of my day.”
MULTIPLE SCLEROSIS AND EXERCISE

Tips to stay cool

Drink cold water before, during and after a workout

Exercise in the early morning or evening

Wear a cooling vest, ice pack or wet T-shirt

Choose activities like swimming that keep the body cool

Use a fan and exercise in an air-conditioned room

Wear loose-fitting clothing

— Source: Dr. Ted Brown, the MS Hub Medical Group

Yoga and MS

The Greater Washington chapter of the National Multiple Sclerosis Society offers adaptive yoga classes for people with multiple sclerosis and maintains a list of swimming pools in the area in which the temperatures are kept between 80 and 84 degrees — an optimal range for people with MS. Fitness scholarships are also available.

For information, call 800-344-4867.

The Multiple Sclerosis Association of King County offers yoga classes. To register, call 633-2606.

Local MS studies

Researchers at the University of Washington are looking for volunteers for two studies involving exercise and multiple sclerosis. One will look at the effect of exercise on depression. Participants will receive $90.

The second study will look at the effects of exercise on lessening disability in people with MS. Participants will receive $100.

For information about the studies, call 221-5688.
MS Q&A
WHAT IS MULTIPLE SCLEROSIS? Experts believe MS causes a person’s immune system to attack and destroy the covering on nerve fibers in the brain and spinal cord. That fatty wrapping, called myelin, helps deliver signals from the central nervous system throughout the body. When those signals are cut off, people experience weakness or lose the ability to use some parts of their body.

WHAT ARE THE SYMPTOMS?

They can vary. However, vision problems, sensitivity to heat, severe fatigue, loss of balance, muscle weakness and difficulty concentrating are all common.

ARE THERE DIFFERENT KINDS OF MS? Relapsing-remitting and secondary progressive are the most common forms, accounting for about 85 percent of all cases. Both are more common in women.

Relapsing-remitting is marked by periodic attacks followed by remissions during which people regain all or part of the functions lost during a flare-up.

Progressive MS is characterized by a slow, steady decline. Secondary progressive often begins as relapsing-remitting.

HOW IS IT DIAGNOSED? An MRI exam can spot areas of damage — or hardened scar tissue — in the brain and spinal cord that are characteristic of MS, but there’s no definitive method for diagnosing the disease. The symptoms can mimic other diseases, and patients often go years without a diagnosis.

IS THERE A CURE? No. There are drugs available that can slow the progression and cut down on the number of flare-ups.

HOW IS IT TREATED? No treatments are available to reverse the damage done by MS. But since the early 1990s, a handful of drugs have been available to help minimize or reduce the severity of attacks. Last month, Tysabri — a promising new treatment for MS — was taken off the market after two users developed a fatal neurological disorder. Some of the drug treatments can cause flulike symptoms.

Researchers at the University of Washington and the Fred Hutchinson Cancer Research Center are also following 26 patients who have received experimental stem cell transplants intended to correct the immune response causing their MS. So far, researchers say the results are promising.

HOW MANY PEOPLE HAVE MS? About 400,000 nationwide and 7,000 in central and Western Washington.

IS IT FATAL? Not necessarily. Many people with MS have a normal life span.

WHAT CAUSES MS? No one knows for sure. Most experts believe it is caused by a combination of a genetic predisposition and some kind of infectious agent, like a virus, that has not yet been identified. MS is not contagious or directly inherited.

IS IT MORE COMMON IN WASHINGTON? Yes. The occurrence of MS in Washington is one of the highest in the country. MS is more common as you move farther from the equator.

In Seattle, a large number of Northern European immigrants could contribute to the prevalence. There might also be a virus found in temperate climates that triggers the disease. It’s unclear whether lower exposure to Vitamin D from sunlight in far northern and far southern latitudes might also contribute to MS.

Research suggests your odds of getting MS are linked to where you lived before age 15. For example, someone who moved to Seattle from Los Angeles at 17 would carry with them a lower risk.

Sources: Dr. George Kraft, professor of rehabilitation medicine at the University of Washington; the National MS Society; Seattle P-I news services; Dr. Ted Brown, the MS Hub Medical Group in Seattle.

— Julie Davidow

P-I reporter Julie Davidow can be reached at 206-448-8180 or juliedavidow@seattlepi.com

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