If you have multiple sclerosis (MS), a question may lurk in the back of your mind: Will this disease take years off my life? The answer is a mixed bag, experts say.
While it’s true that the average life expectancy is somewhat shorter for people with MS than for others who don’t have the condition, the gap has shrunk dramatically in recent years. And while better treatments appear to deserve much of the credit, there’s also plenty you can do to ensure that you live long and well.
What the Studies Say
Over the years, researchers have consistently found that MS, which damages the coating that protects your nerves, can also shorten your lifespan.
In a large 2015 study published in the journal Neurology, scientists compared 5,797 people who had MS with 28,807 people who didn’t but who did have things in common like age and location. The study found that people with MS lived to be 75.9 years old, on average, compared to 83.4 years old for those without. That 7.5-year difference is similar to what other researchers have found recently.
MS and its complications are the cause of death for about half the people diagnosed with the disease. There are several types of MS, and the kind you have may be one thing that determines not only whether you die of MS-related causes, but how long you might live once you’re diagnosed.
“It’s pretty clear that progressive MS is associated with increased mortality,” says neurologist Barry Hendin, MD, chief medical officer for the Multiple Sclerosis Association of America. In primary progressive MS, which is the initial diagnosis in 10% to 15% of people with MS, symptoms don’t improve. They steadily get worse over time.
By contrast, the 85% to 90% of people who get the form called relapsing-remitting MS have symptom-free periods of remission. But more than half of these people eventually develop a progressive form, known as secondary progressive MS.
Overall lifespan is similar in people with both forms of progressive MS. But people with primary progressive MS tend to be older when they learn they have the disease. “So for people with primary progressive MS, the period from diagnosis until death may be shorter,” Hendin says.
Shrinking the Longevity Gap
While 7 or 8 fewer years may leave you feeling shortchanged, that’s a striking improvement over a generation ago, when a someone with MS could expect to live 14 or 15 fewer years than others, Hendin says.
What’s shrinking the longevity gap? A major factor has been the rise of new medications known collectively as disease-modifying therapies, or DMTs. They slow the course of MS, says Bianca Weinstock-Guttman, MD, a professor of neurology at the Jacobs School of Medicine and Biomedical Sciences at the University at Buffalo. The life-prolonging benefits of DMTs are well-established. An important 2012 study found that the first DMT introduced, interferon beta 1b (Betaseron), reduced MS patients’ risk of dying by 46% to 47%.
Because DMTs slow MS progression, starting them early on can help prevent potentially fatal damage to brain tissue, Weinstock-Guttman says. What’s more, DMTs prevent or delay the start of disability related to MS. That’s important, because disability can lead to immobility, which increases the risk for common infections that can prove fatal, like pneumonia, pressure ulcers, and urinary tract infections.
“This is especially a problem in older patients with significant disability,” Weinstock-Guttman says, adding that these people also have a higher risk of falls, which can be deadly, too.
Managing Other Conditions
Disability in MS also contributes to early death because it prevents people from exercising, Hendin says. Lack of physical activity can lead to weight gain. Extra pounds, along with lifestyle factors like smoking and poor diet, can worsen other deadly conditions common among people with MS, like heart disease and strokes. It isn’t clear why MS makes you more vulnerable to these killers, but high levels of chronic inflammation related to the disease may be to blame, Weinstock-Guttman says.
Unfortunately, some people with MS devote so much time and energy to managing the disease that they ignore these and other conditions, such as high blood pressure and diabetes, says Julie Fiol, RN, director of MS information for the National Multiple Sclerosis Society.
“People with MS sometimes hyperfocus on the disease and may not pay enough attention to these other conditions,” Fiol says.
That isn’t surprising, she says, but it is cause for concern. “MS is a complex disease, and managing it can be a full-time job. But it’s ultimately going to benefit the person to manage their whole selves.”
It’s key, Fiol says, for all MS patients to see a primary care doctor regularly, know whether they have other medical conditions, and get routine comprehensive health screenings for cholesterol, blood pressure, blood sugar, and other disease risk factors.
Becoming disabled can also weaken chest muscles, which may lead to another major cause of death in MS: lung disease.
“It’s really important to maintain the ability to take a good, deep breath. That will help prevent many different types of lung problems,” Fiol says. That makes getting plenty of physical activity crucial. The National Multiple Sclerosis Society recently published new exercise guidelines that call for everyone with MS to exercise regularly, regardless of how disabled they are.
Cause for Optimism
Hendin believes there’s another thing shrinking the MS longevity gap: Doctors are paying greater attention to the role that other conditions play in their patients’ health. That includes mental health. “Is there an increased incidence of suicide in MS? Yes,” Hendin says. “But we are paying increasing attention to the role of depression and anxiety in MS.”
Screening for and managing these and other common conditions that affect people with MS, along with early and aggressive treatment with DMTs, will continue to increase their longevity, Hendin says.
“My goal as a physician is to help you lead a normal or nearly normal lifespan,” he says. “So for me, it is a highly optimistic time.”