Most of us know or know of someone with multiple sclerosis (MS), but how much do we really know about this illness? MS is an autoimmune disease that occurs when the body’s immune system misfires against myelin, a fatty substance that insulates the nerve fibers of the brain, spinal cord, and optic nerves.
Approximately 400,000 people in the U.S. are living with MS, yet there are many misconceptions about the illness (and its prognosis).
Here we debunk the top 10 myths, and tell you what you can really expect if you, or someone you love, has been diagnosed with MS.
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MS is a death sentence
The facts: MS is not a death sentence. Life expectancy is normal or close to normal for most people with MS.
It is a life sentence, however, meaning that there is no curealthough there are plenty of treatments to slow MS down and reduce symptoms.
"Many people with MS live full, active lives," says Nancy L. Sicotte, M.D., director of the Multiple Sclerosis Program at Cedars-Sinai Medical Center in Los Angeles. "We think of it as a chronic disease that can be managed, but there are a small percentage of people with severe MS who will die from complications."
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You'll need a wheelchair
The facts: Most people with MS will never need a wheelchair or other assistive device to get around. "When patients come in after their diagnosis, they are usually devastated because they think it means they will be in a wheelchair in five years, but this is simply not true," Dr. Sicotte says.
Thanks to earlier detection and better treatments, you can't assume that you'd know someone has MS just by looking at them.
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Everyone’s MS follows the same path
The facts: This is not your neighbor’s MS or your mother’s or that celebrity you follow on TV. The truth is that no two cases of MS are ever alike. Some people have mild numbness in the limbs once in their lifetime, while others may develop severe paralysis or loss of vision. The course of MS is often unpredictable.
"You can’t even look at family members who have MS to say that 'this is how my MS will behave,'"says Carrie Lyn Sammarco, of the Multiple Sclerosis Comprehensive Care Center at New York University Langone Medical Center in New York City."MS varies from person to person, and even within the person."
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Only old people get MS
The facts:MS is not a disease of aging. Most people with MS are diagnosed between the ages of 20 and 50. That said, young children, teens, and even seniors can also develop MS.
The facts: Researchers can’t say for sure that MS is on the rise. "We may be getting better at diagnosing it and there may be cases that we would not have diagnosed in the past due to the advent of MRI scans," says Dr. Sicotte.
We can say that the gap between women and men with MS is expanding. "We know women are diagnosed with MS more frequently than men, but the ratio is increasing," she says. "It used to be two women for every one man and now it is approaching four women to every one man!"
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Women with MS can’t get pregnant
The facts: Like with some other autoimmune diseases, pregnancy may actually be a good thing for women with MS. "The majority of women with MS will go into remission during their third trimester of pregnancy," Dr. Sicotte says. There is even a growing body of evidence that pregnancy can lower a women’s risk for ever developing MS in the first place.
One study of more than 700 Australian women showed that women with at least one child were about 50% less likely to develop MS than women without kids. The reduction was even greater for women with three or more children. Researchers don’t know why this is, but they suspect that hormonal milieu of pregnancy may play a role.
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Women with MS can’t breast-feed
The facts: While MS often goes into a period of remission during pregnancy, many women will relapse after delivery. "If the disease was active before pregnancy, there is a higher risk for a relapse afterward," Dr. Sicotte says.
Some of the medications used to treat MS flares can’t be taken while breast-feeding. It’s best to discuss your risks and medication with your doctor, but some women can safely breast-feed with MS. Don’t despair, adds NYU’s Sammarco. "We can help develop a plan that allows most women with MS to breast-feed."
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MS risk is all in your genes
The facts: "It is clearly an autoimmune disease," Dr. Sicotte says. Genes do play a role, but they are not the be all and end all. "If you do a detailed family history, there will likely be other cases of MS or autoimmunity in the family, but this is just part of the equation."
Risk for MS is about 10 times higher if you have a family member with MS, but environmental factors and possibly infectious agents may play a role in determining who develops MS and who doesn’t.
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People with MS should avoid the gym
The facts: “In the olden days, people were told that they should not exercise if they have MS,” says Dr. Sicotte. But now we know that the benefits of exercise outweigh the risks for people with MSunless they are experiencing a relapse. The tide changed in 1996 when researchers at the University of Utah showed that aerobic exercise improved many of the symptoms of MS including bladder and bowel function, fatigue, and depression.
Many other studies support these findings. Exercise can cause someone with MS to become overheated, which can trigger symptoms, but staying hydrated and balancing activities with rest can help people stay cool."Weight loss can help too if you are overweight" says Dr. Sicotte. "The less you have to move around, the easier it is to move."
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MS is curable
The facts: Unfortunately, there is no cure for MS yet. That said, long-term remission is possible for many people. Some may never experience any further symptoms after they are diagnosed with MS, but evidence of progression can still pop up on new magnetic resonance imaging (MRI) scans of the brain.
"MRI changes occur 7-10 times more frequently than clinical activity," Dr. Sicotte says. The good news is that there are more MS treatments available today than ever before and advances with stem cell transplants and other cutting-edge technologies may one day represent a true cure for MS.