9 Common Multiple Sclerosis Myths

The science behind multiple sclerosis (MS) changes so rapidly that people with the condition, their families, and even their doctors might not be up to speed with all of the latest news about it.

But holding on to outdated myths and misconceptions about the disease may mean limiting your activities unnecessarily or missing out on the best treatments.

People who live with MS can improve their quality of life by having more accurate, up-to-date knowledge about MS. Here are some of the most common MS myths — and the truth about each one.

Myth 1: People With Multiple Sclerosis Can’t or Shouldn’t Be Physically Active

Fact: At one time, experts believed that physical activity would worsen MS, so they advised against an active lifestyle. Doctors now know that staying active is one of the best ways to stay healthy with MS and delay disability.

Amparo Gutierrez, MD, a neurologist with the Orlando Health Neuroscience Institute, says, “It is strongly encouraged for MS patients to exercise, and the sweet spot seems to be 120 minutes a week at a minimum.” In other words, if you want to do more, you can absolutely consider it.

Myth 2: Multiple Sclerosis Doesn’t Cause Pain

Cleveland Clinic also notes that pain can vary by location on the body, cause, and duration. John Peters, MD, assistant professor of neurology at Yale School of Medicine, adds that “neuropathic pain (burning, tingling, pins and needles) or painful muscle cramping” can occur in some people living with MS.

Gutierrez says, “In some people, MS can cause burning, shooting pain in an arm, a leg, or the face. The pain tends to be limited in the area affected and is determined by the lesions that a particular person has.”

Because chronic pain in MS can present differently from one person to the next, it can be especially hard to treat. Unfortunately, there isn’t a silver bullet that works for all chronic pain problems.

Myth 3: There’s Nothing You Can Do to Help Your MS

• Managing stress
• Eating a healthy diet
• Exercising regularly
• Preventing vitamin D deficiency
• Getting enough sleep each night

Get started on the steps listed here to start retaking control of your MS, and talk to your medical team about others you can take.

Myth 4: You Can’t Work With MS

But Gutierriez suggests that, with the right management, it doesn’t have to be this way. “MS is not a disability if well managed, and patients can live full, productive lives.”

Peters shares similar sentiments, expressing that “most people with MS are still able to work and live full, happy, and productive lives.”

For example, if you’re already working, your employer might be able to provide accommodations like moving your office closer to the restroom and your parking spot closer to the office door. They may also provide mobility assistance, such as installing grab bars in bathrooms and ramps for entrances.

Myth 5: Multiple Sclerosis Is Not Associated With Cognitive Impairment

“In some people, MS can lead to physical and cognitive disability. But this doesn’t happen to everyone,” Peters says. “Starting an effective treatment (disease-modifying therapy) as soon as possible after getting diagnosed helps prevent future declines.”

Myth 6: Multiple Sclerosis Treatment Should Start With Less Powerful Drugs

Fact: “Research has shown that most people benefit most from high-efficacy medications at first, and later, when their disease and body are less prone to inflammation, there can be a de-escalation of treatment,” Gutierrez says.

Peters adds that treatment varies between people with MS. “For most people newly diagnosed with MS, more effective medications (termed highly effective disease-modifying therapies) are the best course of action. But the choice of medication is personalized and different for everyone,” he says.

If you have questions about whether the medications you’re on suit the current stage of your MS progression, ask your doctor.

Myth 7: Women With MS Shouldn’t Get Pregnant

Fact: Experts emphasize that women with multiple sclerosis can get pregnant. MS may even be less likely to flare up later in pregnancy.

However, relapses may get more common right after delivery, and MS symptoms like fatigue or balance issues may make carrying a pregnancy challenging.

Gutierrez says that women who have MS aren’t at an increased risk of preterm delivery, stillbirth, congenital anomalies, cesarean delivery, or miscarriage. “Most MS patients have healthy pregnancies,” she says. “Pregnancy risk is similar to that of a person who doesn’t have MS.”

Myth 8: Multiple Sclerosis Is Contagious

People with MS are much more likely than those without the condition to have signs of a previous Epstein-Barr infection, the cause of most cases of mononucleosis, but the exact nature of the connection with MS isn’t clear.

Myth 9: MS Always Results in Physical Disability

Fact: Gutierrez says, “Some patients who have aggressive forms of MS that our medications have not been successful in stopping may have disability as an unwanted outcome.” But Peters adds that not everyone with MS develops disability. “Starting an effective treatment (disease-modifying therapy) as soon as possible after getting diagnosed helps prevent future declines,” he says.

When MS affects your physical functioning, a wide variety of mobility aids and other devices, as well as physical therapy knowledge, is available to help you live your life to the fullest.

• MS myths hold little or no truth to them. In some cases, such as not engaging in physical activity, they come from previous, disproven advice. Others, such as those concerning MS and pregnancy, may stem from uncertainty surrounding medications that treat MS and pregnancy.
• No matter what you hear, it’s a good idea to speak to someone on your medical team to access accurate information about concerns you may have.
• While MS can make working more challenging, many people with MS continue to work despite their diagnosis. Workplace accommodations, support from coworkers, and other factors can help you continue working for as long as you want.
• MS affects everyone differently, meaning that while some may lose mobility, others may not. Your healthcare team can better answer what your prognosis will be with treatment and by taking steps to manage your health.

Additional reporting by Madeline R. Vann, MPH.