The ten biggest myths about MS.

As with any illness that isn't well understood, there is plenty of misinformation in people's minds about MS. The best weapon against a myth is the truth. Here are some myths you're likely to hear if you haven't heard them already, and here is the information you need to set people straight.

Myth #1. MS is fatal.

In fact, MS is not considered a fatal disease, and earlier studies that suggested higher death rates in people with MS have since been clarified. "Most deaths associated with MS occur due to complications in the advanced, progressive stages of the disease," said Dr. John Whitaker, a neurologist with the University of Alabama and chairman of the National Multiple Sclerosis Society Medical Advisory Board. "Effective treatment during the earlier stages of MS should help to prevent those complications," he added. With today's new medications -- and the promise of others now in the pipeline -- the prognosis looks even better.

Myth #2. Everyone with MS will be in a wheelchair sooner or later.

"A wheelchair is a wonderful symbol as it elicits a lot of sympathy that makes donors reach into their pockets -- but, at least for MS, it's not realistic," said Dr. Nicholas Larocca, Director of Health Care Delivery and Policy Research at the National MS Society.

"If you had to pick a symbol to describe MS, a cane would be more like it."

Though data is scanty, Dr. LaRocca cites one well-designed survey showing that about 25 percent of people with MS use a wheelchair or stay in bed because they are unable to walk. "In reality, a minority of the whole group of people with MS is severely impaired," he said.

However, the likelihood of needing a mobility device rises the longer someone has MS. And many people with MS who use wheelchairs are still able to walk on their own. "They use a wheelchair -- or a cane, or scooter -- to help conserve their energy, or to prevent injury if their gait is unsteady," Dr. Larocca said.

Myth #3. Life in a wheelchair is a half-life. Maybe it's not even worth

living.

"I bought into that myth for a while, when I was first diagnosed at age 24," said Marc Pettibone (now 45), an entrepreneur who serves on the National MS Society Services Advisory Council and the Board of Directors for the Portland, Oregon chapter. Mr. Pettibone, whose MS gradually affected his gait, endured several years of hobbling around on crutches -- and cracked ribs and bruises.

"I fought the wheelchair because I didn't want to be labeled as disabled. When I finally `succumbed,'" he said, "I realized a wheelchair is a wonderful appliance that lets me go almost anywhere I need to. Then I wondered why I wasted all that time!"

Marc Pettibone points out that today's generation of wheelchairs are ultralight, easy to operate, and versatile. And, thanks to the Americans with Disabilities Act, "We don't have to lose our independence. We can make our surroundings accessible."

Today Mr. Pettibone swims laps regularly, drives a car with hand controls, has just had his home renovated so that it's completely accessible to him, and is about to introduce a new food product. "The places I can't reach are few and far between," he says.

Myth #4. You should stop working. The stress is too much for you.

Karen Stone doesn't deny that her MS sometimes is a hindrance. But at the same time, she pointed out, "it's a wellspring of possibilities" that propelled her into a new career. She's living proof that MS doesn't have to interrupt productive, fulfilling work.

Ms. Stone, now 50, was a professional photographer when she was diagnosed with MS in 1986, after 5 years of symptoms. Once she started using a wheelchair, she exchanged her camera for a journalist's pen -- and hasn't looked back since.

The Santa Fe-based writer focuses primarily on disability issues, and is busier than ever. Her writing includes a regular newspaper column and articles in several magazines. She traveled overseas on a writing/photography grant to study accessible architecture, and has just published a book of essays, Awakening to Disability (Volcano Press, 1997).

"Having a disability helped me focus on my spiritual life and purpose," she concludes.

According to Gary Sumner, Employment Projects manager at the National MS Society, many people with MS have been advised to avoid occupational stress. However, there is no scientific evidence that the normal stresses of working have any effect on the disease. Approximately 25-30 percent of people with MS work. That's close to 90,000 people.

"Continuing to work can seem tough, especially when an attack occurs," Mr. Sumner said. "In most instances, you can ride out these fluctuations in the disease. just don't do anything irrevocable in a crisis. Take time to think through your options carefully."

Myth #5. You shouldn't have children. The stress will be too much for you.

Cindy Charon(*) had read enough about MS to know that pregnancy is safe: "I didn't even think about avoiding it," she said. "But it did make me realize I couldn't wait a long time to have kids."

Her pregnancy was uneventful, and, while she has had some recurrence of sensory symptoms and fatigue since, she has never regretted her decision for a moment. The hardest part, she says, is having to work outside the home. She and her husband rely on help from friends and family nearby.

Studies show that Cindy Charon's experience is typical: most women with MS find their symptoms lessen during pregnancy, though the risk of an attack rises somewhat in the first 3 to 6 months postpartum.

Those who fear passing on MS to their children should know that the risk is actually very small: somewhere between 1 and 5 percent, with odds lowest if the father has MS and the child is a boy.

Does MS impair a person's ability to be a good parent? Cindy Charon said, "Motherhood isn't solely a physical thing. I have the physical help I need, and I know I will always be there for my children emotionally." A good social support network is important -- and should be well established before planning a pregnancy.

"Ultimately, there shouldn't be any reason why you can't have the family you want," said Dr. Kathy Birk, obstetrician and gynecologist at the Genesee Hospital in Rochester, New York, whose practice includes many women with MS. "It takes some pro-active planning and talking with your doctor especially if you are taking medications."

Myth #6. Diet can cure MS.

"There have been lots of claims made over the years about special diets for MS," said Dr. Aaron Miller, "but none of them held up in studies." Dr. Miller, who heads the MS Clinic at Maimonides Hospital in Brooklyn, New York, and chairs the National MS Society Professional Education Committee, has seen fad diets come and go. He worries most about the very restrictive ones.

"For example, there's one diet that calls for eliminating all gluten (a protein found in wheat)," he said. "That kind of diet is almost impossible to follow, and it makes people blame themselves when they can't do it. If these people have a flare-up, they think it's because they failed on the diet, not because that's just the course of their MS," he explained.

Dr. Miller recommends the low-fat, high-fiber, varied diet that all Americans should be eating. The American Heart Association and the American Cancer Society recommend the same thing. "Getting plenty of fiber is important, since some people with MS have trouble moving their bowels," Dr. Miller added.

Myth #7. Wilipower can cure MS.

This myth is particularly vicious, according to Dr. Sarah Minden, psychiatrist at Brigham and Women's Hospital in Cambridge, Massachusetts, because it implies that "MS is all in your head."

"Many of the most troubling symptoms of MS, like sensory loss, fatigue, and paresthesias, are invisible," said Dr. Minden. What's more, MS symptoms can be vague. They typically come and go unpredictably.

"So when someone with MS describes those symptoms, others may find it hard to be empathetic." Add to that the belief that feeling better is just a matter of willpower. This amounts to encouraging someone with MS to blame themselves if their illness worsens. "They might feel as if they haven't tried hard enough," said Dr. Minden.

Has willpower ever been shown to cure an illness? "Would that it could!" she said.

Myth #8. People with MS (or any chronic disease or disability) are brave

and courageous.

"Ah, the `supercrip' myth," laughs Laura Remson Mitchell, 51, a Winnetka, California-based activist and writer who was diagnosed with MS in 1978. "It just shows how little most non-disabled people know about what people with disabilities are really like."

Laura Mitchell has thought about why society tends to portray someone in a wheelchair as either a poor victim or noble saint. "It's one way people distance themselves from a problem they don't want to happen to them. It's also a convenient way to ignore someone with a disability," she suspects. "The thinking is: `if a disabled person is such a wonderful overcomer, then I don't have to help them.'

"Undemeath this is the false assumption that life with a disability must be terrible," Ms. Mitchell continued. "People assume `if it happened to me, I couldn't live with it -- so this disabled person must be really special.'"

This is just the sort of myth that Ms. Mitchell hopes to overcome in her work educating legislators about MS. The founder of MS-CAN, the MS California Action Network that links all the California MS Society chapters, she now serves as its government issues coordinator (her profile appeared in the Fall/ Winter 1996 issue of INSIDE MS).

"As people with disabilities become more integrated into society, some of those fears and stereotypes may change," she speculated. "Perhaps then people will see the person first, and the disability second, if at all. But we still have a long way to go."

Myth #9. MS doesn't cause pain.

"There are several types of pain that can occur in MS, and the pain is very real," said June Halper, MSN, RN, CS, executive director and CEO of the Gimbel MS Center in Teaneck, New Jersey. In fact, one study showed that as many as 55 percent of people with MS had clinically significant pain at some time during the course of the disease.

Pain syndromes can be shortterm (acute) or long-term (chronic), Ms. Halper explained, but virtually all of them are treatable. Pain may take the form of trigeminal neuralgia -- sharp pains in areas of the face, or Lhermitte's sign, an electric-shock-like pain that travels down the arms and back. Some people with MS report a girdle-like tightness around the waist or chest, while others may have dysesthesia, or pronounced discomfort when their skin is touched.

Why would anyone think that MS is painless? "I think it's because until very recently, we didn't know enough about MS or about pain, and there wasn't much we could do to treat either," June Halper speculated. "Those days are gone, and people with MS should reject any suggestion that pain is not real or that nothing can be done for it."

Myth #10. MS is the same as muscular dystrophy.

"I'm not sure why people get them mixed up," said Abe Eastwood, director of the Research and Grants Program at the National MS Society (and formerly with the Muscular Dystrophy Association). Because both illnesses are identified with wheelchairs? Because muscular dystrophy gets a lot of media play with its Labor Day telethon? "Maybe," he answered. "Or maybe it's because people remember information grouped under similar classifications."

But if you have MS don't let anybody call you "Jerry's kids." Tell them to call 1-800-FIGHT MS [1-800-344-4867] for some facts.

(*) Cindy's name has been changed as she prefers limited disclosure.

Joyce Hendley is a freelance writer in Minnesota. Her article on computer adaptations appeared in INSIDE MS last Winter.