From a loss of vision in one eye to what's typically described as a “squeezing” sensation around the waist, the signs of multiple sclerosis can be unusual — and easy to miss. What's more, experts say that no two cases of this autoimmune disease are exactly the same, which is why “many people call MS the ‘snowflake disease,’ “ says neuropsychologist Meghan Beier, an assistant professor of physical medicine and rehabilitation at Johns Hopkins University School of Medicine. “Some people have mild symptoms with little impact on their day-to-day life, yet others have a very severe impact and need 24-hour-a-day care. Some people have cognitive symptoms; some don't. Some have physical symptoms; some don't. Some have pain; some don't.”
Adding further complexity, MS, which attacks the brain and spinal cord, can affect the same person in dramatically different ways depending on whether they're going through an acute episode (also called a flare or attack). Most MS patients have the “relapsing-remitting” form of the disease, which is characterized by attacks followed by quieter periods.
Although some describe the less active stage as “remission,” Beier hesitates to use that word because it incorrectly suggests that the disease and all related symptoms have relented. When patients are not in the midst of an episode, they usually still have some problems, like fatigue or chronic pain, she explains; they're just not as ill as they are during a flare. (It's not unusual for MS patients experiencing an acute attack to be hospitalized because they can't walk.)
Christina Applegate Shares Her Diagnosis
This month, Christina Applegate announced on Twitter that she had been diagnosed with multiple sclerosis (MS). Although the Dead to Me actress hasn't publicly disclosed details about her health status, at 49 she falls into the three-decade window when the disease is most often diagnosed: between ages 20 and 50.
When Applegate announced her diagnosis, actress Selma Blair and TV host Montel Williams, who also have the disease, promptly reached out to lend their support. Such potential connections are important, experts say, since research has shown that MS patients who have a strong social network tend to have a better mood and quality of life, and a better chance at fending off the “impactful depression and anxiety” that about half the people with MS experience, as Beier, of Johns Hopkins, notes.
For anyone, at any stage of the disease, joining a support group for people with MS can be very beneficial. Working with a neuropsychologist to manage mood issues as well as any cognitive problems can also be key. “Neurological conditions can be very isolating,” says Valles, who suggests that caregivers also seek out social support. (You can find such groups through the National Multiple Sclerosis Society.)
To understand this variability, it helps to know a little about what causes MS and how it's treated. “With multiple sclerosis, the immune system primarily attacks the myelin — the lining that covers neurons in the brain and spinal cord,” Beier says. “That can lead to signals being transmitted intermittently or very slowly, or it can lead to cell death so signals aren't being transmitted at all."
Over time, MS tends to transition from the relapsing-remitting pattern to what's called the “secondary progressive” course, which is when neurologic function significantly worsens and disability increases.
It's impossible to say when a particular patient might have to deal with serious permanent disability, largely because the last few decades have yielded major advances in disease-modifying medications. “In the ‘90s, when I was in graduate school, we learned that it would be about 15 years from the time of diagnosis to using a walker or a cane, and maybe 30 years to needing a wheelchair, but that is out the window now,” Beier says. Many people who've lived with the disease for a long time, she notes, are still walking independently because “they're not having the same progression.”