8 things a neurologist wants you to know about multiple sclerosis

Multiple sclerosis (MS) is a complex autoimmune condition that affects nearly 1 million people in the United States, according to the National Multiple Sclerosis Society. The disease may produce a range of symptoms, including fatigue, muscle weakness, and cognitive impairment, as well as difficulty with movement and vision. Because it can look so different from person to person, misconceptions about MS abound, from whether it’s curable to what the future holds for someone with the condition.

Ellen Lathi, MD, a neurologist with the Elliot Lewis Center for MS Care in Wellesley, Massachusetts, helps clear up some of the most common misunderstandings about MS and explains what the outlook looks like for patients.

Although some people with MS have a family member with MS, it’s not an inherited disease. Still, a family link can indirectly raise the risk of developing MS. That’s because you can inherit genes that increase your risk of developing the condition.

A 2016 Danish study published in Multiple Sclerosis Journal helped support the genetic component to MS risk. It found that an identical twin with a twin who has MS has a 24 percent risk of getting MS. With non-identical twins, the risk was just 3 percent. Other research has shown that if both of a person’s biological parents have MS, their risk of developing MS is roughly 10 times higher than that of someone in the general population.

Genetics are one piece of the puzzle of factors that may lead to the condition, which leaves considerable room for environmental factors.

“The best example is probably vitamin D,” says Dr. Lathi. “The hormone plays a role in the risk of MS, perhaps dating back to in utero and certainly in childhood, adolescence, and young adulthood.” Reduced levels of vitamin D are linked to increased MS risk.

Relatedly, MS risk differs by geography. Multiple studies have established that distance from the equator is a factor and that the further away someone lives from the equator in cooler climates, the higher their likelihood of developing the condition.

In a 2020 study published in Environmental Epidemiology, researchers found that living nearer the equator and experiencing higher temperatures lowered a person’s risk. The risks of developing MS and having more severe symptoms is higher in people who had less exposure to the sun’s UVB rays as children and throughout their lives, according to a 2022 study published in Neurology.

This connection may be through vitamin D: More sunlight typically means the body has a greater opportunity to make natural vitamin D, which occurs when the skin is exposed to sunlight.

Lathi also notes that one’s birth month has also been believed to have a tie to MS risk. That association likely traces to vitamin D and the mother’s reduced exposure to sunlight during a winter pregnancy. People who have concerns about vitamin D levels during pregnancy—or any time—should talk with a healthcare provider (HCP). A blood test can help determine whether you have a deficiency, in which case you might be advised to take supplements to boost your levels.

Another key environmental factor for MS, according to Lathi: smoking. If you smoke, quit now to help reduce your risk of MS (and a slew of other health issues). If don’t smoke, don’t start. Obesity also increases inflammation in the body, which can raise the risk of developing MS and worsen symptoms if you already have MS. It’s another reason to try to maintain a healthy weight as much as possible.

The group MS affects most is women of childbearing age, although it can affect any age group and sex, Lathi says. “People are often diagnosed in the prime of their lives,” in their 20s to 40s, she adds.

MS can follow different patterns. The most common course of the disease involves remissions and relapses, which means periods in which symptoms ease or disappear followed by periods in which they return and possibly increase. This form tends to affect younger women more than older people or men.

Another MS pattern, one that affects about 15 percent of people with MS, is a more consistently progressive course. This type tends to have an older average age of onset and affects men and women about equally.

Many people experience both forms, starting with the relapsing-remitting pattern and then shifting to a progressive pattern that still involves detectable disease flares, says Lathi. Still other patients may have only one episode of MS-like symptoms. Until another bout of symptoms occurs, those patients will be described as having a “clinically isolated syndrome,” rather than MS.

Patients with MS tend to visualize a life of “severe disability,” says Lathi. But that outcome is not inevitable.

From the onset of the condition, the average time to needing assistive devices such as a cane or wheelchair is about 30 years. While some with MS do end up needing to use a wheelchair, two-thirds will be capable of walking, though they may need an aid, like a cane, to get around. Others, due to weakness or balance issues, may need to use a wheelchair or mobility scooter to manage.

The notion that pregnancy isn’t safe for MS patients is “nonsense,” according to Lathi. “It’s a concept left over from years and years ago.” Having an MS diagnosis “should not affect a patient’s decisions about family planning,” Lathi says. “Women with a disability can have a normal pregnancy if they choose to have a family. Pregnancy is not a bad thing for MS.” In fact, some people find that their MS symptoms ease during pregnancy.

Other pregnant people may be affected, depending on the status of the MS. Fatigue or bladder symptoms might increase, and they may have difficulty walking in the later stage of pregnancy due to gait problems. Past studies have shown that people may also experience more MS relapses than usual in the three months after delivery. Some recent studies, however—one published in JAMA Neurology and the other in Neurology, both in 2020—suggest this might not be the case, or at least that breastfeeding might help prevent relapses.

If you have MS and are considering pregnancy or are already pregnant, talk with your OBGYN about what special steps, if any, to consider. Be sure to ask how your MS therapies play into pregnancy. Online support groups are also available for parents or expecting parents with MS. The online community page hosted by the National Multiple Sclerosis Society is a good place to start looking.

“We recommend an individualized exercise plan for everyone with MS,” says Lathi. Patients will sometimes say that they can’t exercise because of their fatigue, but “a consistent exercise plan is one of the best ways to combat fatigue,” Lathi says. It also may help keep disability delayed or at bay.

Some people with MS do feel a worsening or flare of their symptoms when their body temperature rises during exercise, Lathi notes. Although the effect is temporary and does not cause progression or nerve damage, people with MS who heat affects negatively should use strategies to stay cool, she says. These may include staying close to air conditioning on hot, humid days as much as possible or even buying a cooling vest.

The idea that MS is swiftly fatal “couldn’t be farther from the truth,” says Lathi. While life expectancy for people with MS is seven years shorter than average because of complications of the disease or other conditions that often occur simultaneously, it’s improved significantly over time. “We believe this is due to treatment breakthroughs, improved health care, and lifestyle changes.” The most common form of MS, the relapsing-remitting form, does not itself affect life expectancy.

Because many MS-related complications can be managed or even prevented, it's important to live healthfully and get necessary care, including screenings for diseases like cancer. In very rare cases, MS can be fatal in patients who have a rapidly progressing form of the condition. Some research shows that Black Americans have higher mortality rates from MS than other racial and ethnic groups, which points to the need for earlier detection and more comprehensive care for Black people.

The form of MS that flares and then shows remission is treatable, says Lathi. The goal with MS drug therapy is to reduce the flares, or relapses, and slow progression of disease. More than a dozen of these disease-modifying drugs are available and FDA-approved. Several drugs have been approved by the FDA to treat the more progressive forms of MS as well as the clinically isolated syndrome. Drugs may be taken by pill, injection, or intravenous (IV) infusion.

Speak to your HCP about your choices, including side effects, Lathi says. Just know that therapies aren’t always sure things. “Even with these medicines, people with relapsing MS continue to experience disease activity and worsening disability,” says Lathi.

To help manage exacerbations or severe flare-ups, high-dose corticosteroids can often help. Rehabilitation programs can also help you maintain function and carry out your daily tasks. And since depression, anxiety, and mood shifts are common in MS patients, mental health care is considered an integral part of a comprehensive treatment approach, alongside medications and rehabilitation therapies.

Although MS can’t be cured, researchers continue to learn more about the condition. Past research has spurred the development of many treatments, strategies, therapies, tools, and mobility and accessibility devices for treating this condition and improving symptoms and quality of life. Research continues at a steady pace, with the National Institutes of Health giving out $121 million in MS research grants in 2022 with $125 anticipated for 2023.