Actress Selma Blair revealed in an Instagram post Sunday that she has multiple sclerosis. Blair, 46, wrote that she was diagnosed in August but has “probably had this incurable disease for 15 years at least.”
Blair, who is starring in the upcoming Netflix sci-fi drama Another Life, posted a selfie taken in a mirror; in her caption, she described a recent wardrobe fitting. The show’s costume designer, she wrote, “carefully gets my legs in my pants, pulls my tops over my head, buttons my coats and offers her shoulder to steady myself,” she wrote. “I have #multiplesclerosis.”
“I am disabled,” Blair continued. “I fall sometimes. I drop things. My memory is foggy. And my left side is asking for directions from a broken GPS. But we are doing it.”
The actress wrote that she was diagnosed after a friend convinced her to see a doctor, who found a lesion on an MRI scan. “I have had symptoms for years but was never taken seriously until I fell down in front of him trying to sort out what I thought was a pinched nerve,” she wrote.
Multiple sclerosis, frequently referred to as MS, affects an estimated 2.3 million people worldwide. To learn more about the condition, Health spoke with Jonathan Howard, MD, a neurologist at NYU Langone’s Multiple Sclerosis Comprehensive Care Center and author of Multiple Sclerosis: Questions and Answers for Patients and Loved Ones. (Dr. Howard has not treated Blair.) Here’s what he wants people to know.
What is multiple sclerosis?
MS is a disease in which the immune system damages the myelin, or outer coating, in the brain and the spinal cord, affecting how nerves communicate with each other. “We don’t know what causes it or what triggers it; it’s some combination of genes and environmental factors,” says Dr. Howard. “If I were evil and wanted to give someone MS, I wouldn’t know how.”
According to the National Multiple Sclerosis Society, MS incidence and prevalence are not consistently tracked in the United States, making it difficult to estimate how widespread the disease really is in this country. But Dr. Howard says it’s thought to affect up to one million Americans, or about one in 300 people. “Everyone probably knows someone with MS,” he says.
Anyone can get MS, but women are two to three times as likely to develop the disease as men. It’s most common in Caucasians, but it also occurs in African-Americans, Asians, and Latinos. Most people are diagnosed between the ages of 20 and 50.
The most common form of MS is relapse-remitting multiple sclerosis, meaning that symptoms come and go. For many people diagnosed with this form, the disease eventually becomes progressive, meaning that it gets worse over time with fewer (or no) periods of recovery in between.
How is MS diagnosed?
The symptoms of MS can vary from person to person, but they often include vision loss or double vision, fatigue, trouble sleeping, numbness or tingling, nerve pain, and loss of strength and coordination. Usually, these symptoms occur during acute episodes, known as relapses, and get better on their own, even if nothing is done.
“That’s one reason why a diagnosis can be missed,” says Dr. Howard. “But over months and years and decades, these disabilities can begin to accumulate, and a diagnosis becomes more likely.”
A diagnosis of MS should be made by a neurologist. In order to fit the criteria for diagnosis, a patient must have had at least two relapses, or one relapse combined with evidence of inflammation on an MRI.
Active inflammation, which occurs during an MS episode, can appear as abnormal lesions on the brain during an MRI scan. But even after an episode has passed, scars caused by inflammation can be detected as well.
MS is a spectrum disease—which is why a diagnosis can take years
It’s not surprising that MS might go undiagnosed for many years, says Dr. Howard, because the disease’s symptoms can range from mild to severe. “I know 20-year-olds who are in wheelchairs from MS, and people in their 60s and 70s who you wouldn’t know they’re sick,” he says.
And because the symptoms for MS are so varied—and can also be symptoms of many other conditions—it can be easy for people to ignore them, or assume they’re caused by something else. It can also work the other way, says Dr. Howard. “If you Google MS symptoms, you can come up with almost anything,” he says. “So it’s not hard to see why people get worried, and some people convince themselves that they have this disease.”
When MS symptoms first appear, it’s usually because some bodily function has gone wrong, says Dr. Howard. “Maybe someone loses vision, or they become numb from the waist down or on one side of their face. It’s unusual for people to have all the symptoms, unless they’ve had the disease for 40 years and it’s progressively gotten worse,” he says.
It can’t be cured, but symptoms can be managed
During an MS relapse, steroids can be used to reduce inflammation and relieve symptoms. This can provide a “temporary band-aid,” says Dr. Howard, but patients should also take disease-modifying drugs aimed at preventing future relapses.
These drugs—more than a dozen are currently on the market—are not made to make people feel better, says Dr. Howard. “The good they do is invisible,” he says. “When they work, nothing happens.” Patients should be started on one of these treatments as soon as possible after diagnosis, he says, in order to prevent more relapses or further complications.
Making healthy lifestyle choices, like exercising regularly and following a balanced diet, cannot make MS go away, nor will it prevent someone from getting it in the first place. But being in otherwise good health and staying physically fit can still help improve a person’s quality of life with MS.
“The number one and two causes of death in people with MS are heart disease and cancer, much of which is preventable,” says Dr. Howard. “And if someone is destined to lose 10% of their strength from MS, if they start with a very fit and healthy baseline, they’re going to be better off than someone who leads a sedentary life.”
It’s important to remember that MS is different for every person, and that the disease can indeed be debilitating—especially the progressive form. But Dr. Howard says that patients have reason to be optimistic. “Since 2010, we’ve seen five or six new treatments that are really changing the prognosis,” he says. “Not for everyone, but certainly for more and more people, MS is no longer the crippling disease that many people fear.”