The debilitating neurological disease is more than twice as common in women and typically hits between the ages of 20 and 40.
Multiple sclerosis (MS) is the leading cause of irreversible neurological disability in women in the U.S. According to the National Multiple Sclerosis Society, it’s is at least two to three times more common in women than in men. The reason? That still remains one of the major mysteries of the disease.
MS is an autoimmune disease that causes damage to nerves in the brain and spinal cord. More than 2.3 million people are affected by MS worldwide, but the CDC doesn’t require new cases to be reported and the symptoms often go unnoticed for years, making it difficult to know exactly how many people in the U.S. have it.
“About 70 percent of MS patients are female,” Timothy Vollmer, M.D., neurologist at the University of Colorado who specializes in multiple sclerosis, tells SELF. The average age of onset is 29, and 80 percent of people with MS develop it between the ages of 20 and 40, he adds. Though everyone should be aware of the disease, the stats suggest it’s even more important for women in this age group to understand MS and the signs to look out for.
Multiple sclerosis is a condition where the immune system attacks nerves in the brain and spinal cord.
Specifically, the body attacks the protective coating (myelin sheath) around nerve fibers. When the myelin sheath is worn away, the nerves don’t work how they’re supposed to, causing communication errors between the brain and body, and eventually, damaging the nerves beyond repair. MS attacks also cause inflammation in the brain, which can lead to atrophy. This decreasing brain volume causes severe disability over time.
Typically, MS follows a classic relapse/remission pattern. “You get this burst of inflammation in a spot in the brain, and the inflammation runs its course for about two months,” Vollmer explains. After this “attack,” you then “recover,” and the disease and symptoms retreat for a time period until the next attack. If left untreated, this type of MS will eventually enter a progressive phase, where the disease advances and symptoms continually worsen. “We can’t stop the progressive stage once it starts,” Vollmer.
About one in 10 people with MS have what’s called primary progressive MS. Instead of following the relapse/remission pattern for a while, this form of the disease is progressive right off the bat, with no remission periods.
The cause of MS is tough to pinpoint, though environmental factors seem to play a big role.
Family history (especially your mother) of multiple sclerosis makes you more susceptible to it, Vollmer says. “One out of 20 children born into a family with MS will develop it.” Researchers have identified 55 genes that are associated with either an increased or decreased risk of developing MS, Vollmer says, but what that can reveal is relatively small. There seem to be genetic, hormonal, and environmental factors at play. MS occurs in all ethnic groups, but it’s more common in Caucasians of northern European ancestry, according to the National MS Society. Vollmer says that there’s a powerful association between MS risk and low vitamin D exposure in utero and early in life. (Low vitamin D levels when you have MS is also associated with higher MS activity.) This vitamin D connection may also help explain the latitude-based geographical trend: MS is more common in geographical areas further from the equator—though there are still some ethnic groups that rarely get the disease despite their location on the map.
Vollmer adds that people born in cities and those in upper income brackets tend to develop MS more often. The hypothesis is that living in a cleaner, man-made environment (versus close to animals and dirt), the immune system may not develop all of the regulatory circuits it should, causing it to malfunction.
Multiple sclerosis can be managed if it’s caught early, which is why it’s important to recognize its symptoms.
Vollmer calls MS a relatively invisible disease, since many of the symptoms can only be felt by the patient. “Oftentimes, family member and friends may not know what they’re going through.” The symptoms of the disease are common symptoms of many other less serious ailments, which makes MS difficult to spot. “They’re often subtle enough that healthcare providers miss it,” Vollmer adds. He also notes that when patients present with their first symptoms, it’s very likely they’ve had the condition for a decade already and have already suffered significant brain volume loss—this atrophy is the strongest predictor of disability, so it’s key to catch it early. Where in the brain the attacks occur can drastically change when symptoms pop up and how debilitating they are.
The most common symptoms of MS are: fatigue, depression or anxiety, numbness or tingling in the legs, weakness, vision problems, loss of motor control, and loss of bladder control. MS can also cause sexual dysfunction—specifically, make you unable to achieve orgasm “because there’s not enough sensory input back to the spinal cord,” Vollmer explains. Fatigue and depression or anxiety can be the earliest signs and precede a diagnosis by years. Vollmer recommends that any young woman who has serious fatigue that interferes with the ability to function on a daily basis and can’t figure out a reason why, should get an MRI. “It’s not invasive and it’s the single most effective way to check this diagnosis,” he says. If you’re depressed, achey, and just don’t feel like yourself for months at a time, see your doctor.
Multiple sclerosis is treatable, but there’s some debate in the medical community on the best way to approach it.
“It’s one of the most treatable disease in neurology now” as long as it’s diagnosed early, before too much lasting brain damage occurs, Vollmer says. Recent MS research has made big advances in both determining the causes of the disease and how to treat it most effectively.
There’s typically three aspects of treatment: immunological drug therapies (which help regulate the immune system), symptomatic drug therapies (which treat specific symptoms, like pain), and lifestyle changes. “If we can get people to maintain healthy lifestyles, they can drastically improve outcomes,” Vollmer says. That’s because healthy habits, like exercising regularly, can help the brain make new connections and build strength.
There’s a big debate among neurologists about whether to approach treatment by using the most effective, often riskier drugs right off the bat (early effective therapy), or starting with the less effective, yet safer ones, and working up if there’s no progress (escalation therapy). “Most of the world does escalation therapy, seeing if patients fail on old drugs before considering using newer drugs,” Vollmer explains. “Most MS centers in this country do the opposite—we select the most effective therapy and intervene as early as we can.” The problem is that newer drugs are more complicated, riskier, more expensive, and often have insurance limitations. “Bottom line is, try to get at least one second opinion to make sure you understand your options,” Vollmer says.