Don’t be fooled by outdated beliefs about multiple sclerosis. Here, we separate fact from fiction.
By Becky UphamMedically Reviewed by Jason Paul Chua, MD, PhD
Reviewed: March 16, 2022edically Reviewed
Getting out for a walk may be one of the best things you can do for MS.Alamy
The science behind multiple sclerosis (MS) changes so rapidly that people with the condition, their families, and even their doctors can be forgiven for not knowing 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 But holding on to outdated myths and misconceptions about the disease may mean limiting your activities unnecessarily or missing out on the best treatments.
With more accurate, up-to-date knowledge of MS, people who live with it can have a higher quality of life. 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 multiple sclerosis, 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.
Devon Conway, MD, a neurologist at the Cleveland Clinic in Ohio, encourages his MS patients to exercise regularly.
“In my experience, it can make fatigue worse at first, but if a person can get over the initial hump, it can actually improve fatigue,” Dr. Conway says.
A meta-analysis published in March 2020 in BMC Neurology found that exercising regularly significantly reduced fatigue in people with MS. The authors concluded that a regular exercise routine is “strongly recommended” as part of an overall MS management program.
To get the most benefits from exercise, choose activities that suit your interests and your physical abilities, and make sure you’re active on most days of the week. If you’re not sure how to get started with exercise, or you need some help identifying exercises that will improve your fitness without wearing you out, try working with a physical therapist or a personal trainer who is knowledgeable about MS.
Myth 2: Multiple Sclerosis Doesn’t Cause Pain
Fact: Many people living with multiple sclerosis can tell you the truth about this MS myth: They do feel pain. Nonetheless, some healthcare providers may not consider pain a symptom of MS, says John Corboy, MD, a neurologist at UC Health and professor at the University of Colorado School of Medicine in Aurora.
“Multiple sclerosis clearly does cause pain,” he says. A study published in July 2017 in the Scandinavian Journal of Pain confirmed that people with multiple sclerosis not only experience long-term chronic pain but also report increased pain over time.
There are three main causes of pain in MS, according to Léorah Freeman, MD, neurologist and assistant professor at the McGovern Medical School at the University of Texas Health Science Center in Houston. These include neuropathic pain, pain related to spasticity, and musculoskeletal pain due to immobility and fatigue.
Because chronic pain in MS can present differently from one person to the next, it can be especially hard to treat, but it’s critical that it’s addressed, says Anna Kratz, PhD, associate professor of physical medicine and rehabilitation at Michigan Medicine in Ann Arbor. “People with MS need help with their pain,” she says.
Unfortunately, there isn’t a silver bullet that works for all chronic pain problems. “You may need to try a few different things, often in combination, to find out what works for you,” Dr. Kratz says.
Myth 3: I Can’t Do Anything to Help My MS
Fact: Dr. Corboy says that there are many steps people with MS can take to improve their quality of life and possibly slow the progression of the disease. Not smoking, being at a healthy weight, exercising regularly, and making sure you aren’t deficient in vitamin D have all been shown to help people with MS manage their condition, he says.
Because illnesses such as diabetes and hypertension may worsen MS, keeping focused on wellness is truly important, says Justin Abbatemarco, MD, a neurologist at the Cleveland Clinic who specializes in treating MS.
“I always emphasize the importance of a healthy lifestyle; it can be empowering for people to realize that they have some control over their disease,” Dr. Abbatemarco says.
Taking your medications as prescribed can make a difference, he says. “While these medications don’t cure MS, they can reduce the number of relapses a person has and help slow the progression of the disease later on,” Abbatemarco says.
If you’re feeling powerless over your multiple sclerosis, get started on the steps listed here, and talk to your medical team about others you can take.
Myth 4: I Can’t Work With MS
Fact: MS is usually diagnosed between the ages of 20 and 45, a time in life when most people are working on building a career. Although MS progresses differently in everyone, symptoms such as fatigue and trouble concentrating can eventually make a keeping a traditional job difficult: It’s estimated that 70 percent of people with multiple sclerosis leave their job within 10 years of their diagnosis, according to the MS International Federation’s Global MS Employment Report 2016.
Even though it is sometimes necessary to leave your job, continuing to work can have many benefits beyond a paycheck, according to Lauren Strober, PhD, a senior scientist in the Center for Neuropsychology and Neuroscience Research at the Kessler Foundation in East Hanover, New Jersey.
“We know that MS affects women more than men, and when we study women — not just women with MS — who are in the workforce, they value their work less because of prestige and the financial gain. For them, it’s more about their self-esteem and identity — even their main social support,” she says.
If you are currently working or looking for a job, do some research about what would enable you to continue working before you quit your job or give up your job search. For example, if fatigue is an issue, ask your employer about accommodations such as flexible working hours or the possibility of working from home, suggests Meghan L. Beier, PhD, a rehabilitation psychologist and assistant professor of physical medicine and rehabilitation at the Johns Hopkins University School of Medicine in Baltimore.
The Americans With Disabilities Act protects your right to stay employed and requires your employer to work with you on reasonable accommodations.
Myth 5: Multiple Sclerosis Is Not Associated With Cognitive Impairment
Fact: Multiple sclerosis is typically thought of as a condition that affects mobility, but the fact is that it can also affect your cognitive functioning, such as thinking and memory.
How much MS impacts your cognitive abilities can vary from person to person, says Scott Ireland Otallah, MD, a neurologist who specializes in multiple sclerosis at Atrium Health at Wake Forest Baptist in Winston Salem, North Carolina.
“Some people with MS have no deficits, whereas others have brain fog symptoms, such as difficulty with short-term memory, multitasking, or concentration,” he says.
This could be due to inflammatory activity in the brain, but there could be other causes as well, says Dr. Otallah. “We can screen for other things that could be contributing, including vitamin deficiencies or the medications the person is using. For example, sometimes medications for neuropathic pain can affect cognitive abilities.”
Myth 6: Multiple Sclerosis Treatment Should Start With Less Powerful Drugs
Fact: “The highest risk of developing irreversible problems is right after you are diagnosed,” Corboy says. In spite of that, some people with MS — and their doctors — prefer to begin treatment with drugs that are less powerful and have fewer side effects. He attributes this to a cultural preference for waiting and seeing how things progress, an approach that could be harmful for those with multiple sclerosis.
A study published in January 2019 in JAMA found that, in people with relapsing-remitting MS, initial treatment with the highly effective disease-modifying therapies fingolimod, alemtuzumab, or natalizumab was associated with a lower risk of conversion to secondary-progressive MS, compared with people who started on the lower-efficacy drugs glatiramer acetate or interferon beta.
If you have doubts about whether you’re on the most powerful medication suitable for your situation, ask your doctor.
“There is a wealth of options, and we’re almost always able to find a medication that works with a patient’s lifestyle and with a side effect profile that’s manageable,” says Abbatemarco.
Myth 7: Women With MS Shouldn’t Get Pregnant
Fact: Experts emphasize that women with multiple sclerosis can get pregnant and might even find some relief from MS symptoms during pregnancy, according to a paper published in February 2020 in Medicina. However, it’s not uncommon for a woman to have a relapse in the months following delivery, so lining up sources of help and support ahead of time is recommended.
Women who have MS aren’t at an increased risk of preterm delivery, stillbirth, birth defects, cesarean delivery, or miscarriage.
Although the majority of MS medications have not been well-studied during pregnancy and are therefore not recommended, there are other treatment options for women who need to continue their therapy during pregnancy. If you have MS and want to have a baby, talk with your doctor about all of the medications you’re taking, including those for MS, to find out the best options for you.
Myth 8: Multiple Sclerosis Is Contagious
Fact: This myth may continue to circulate in part because “a relationship with the Epstein-Barr virus (EBV) does exist, but there’s never been any evidence that MS is contagious or in any way transmissible,” Corboy says.
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.
A study published in October 2021 in JAMA Network Open found that people diagnosed with infectious mononucleosis, an acute illness most commonly caused by EBV, during childhood were nearly twice as likely to develop MS, and for people diagnosed during adolescence, the risk of MS was three times higher.
Corboy points out that researchers have failed to transmit multiple sclerosis in a lab to animals for research purposes, so it’s unlikely to happen in your home or community.
Myth 9: I’m Going to Be Physically Disabled
Fact: Some people with MS do experience severe disability, but it’s difficult to predict the rate of progression of the disease or the eventual degree of disability for any one person, says Abbatemarco.
A previous study found that 15 percent of people with MS reported a need for ambulatory aid in the year following diagnosis; and after 45 years of living with MS, 76 percent required ambulatory assistance.
Advancements in MS medications, combined with a healthy lifestyle and the use of tools like physical therapy, will continue to improve the prognosis for many people, Abbatemarco says.
When MS does affect your physical functioning, there are a wide variety of mobility aids and other devices, as well as physical therapy know-how, available to assist you in living your life as you want to.
Additional reporting by Madeline R. Vann, MPH.