Your Top RRMS Questions, Answered!by Julia Savacool Deputy Editor
Even the words “multiple sclerosis” sound serious—and a little scary. And in truth, the disease is a challenging one, affecting your mind, memory, sense of balance, and energy levels, to name a few. But the important thing to know is that MS—while not curable—is highly manageable, particularly the relapsing-remitting form of the disease (RRMS). We asked Lauren B. Krupp, M.D., a neurologist and head of NYU Langone’s Multiple Sclerosis Comprehensive Care Center in New York City, for some straight answers to common questions about this disease.
Who Is a Typical MS Patient?
Basic answer: Anyone can get MS. More than one million Americans have the disease, some as young as 3, others in their 80s and 90s. Typically though, the disease shows up in people between ages 20 and 50, with women three times more likely to get it than men. “And about 10% to 15% of the time, the person is a bit older, mid-40s to mid-50s,” says Dr. Krupp. “In these cases, the person may have a slow, insidious progressive problem, say, trouble walking or with strength.”
What Are Early Signs of RRMS?
“The earliest indicators of the disease might be symptoms of an abnormal sensation,” like difficulty walking or loss of balance, says Dr. Krupp. “Or there might be a change in vision, like double vision or blurred vision.” The tricky thing is that MS affects different parts of the central nervous system differently in different people, meaning how you experience the disease will not be the same as someone else. Still, there is common ground: More than 50% of people experience difficulty with memory, thinking, and concentration, and extreme exhaustion is a hallmark of the disease.
What Causes RRMS?
Ah, the million-dollar question. Think of MS as the perfect storm of dozens of factors coming together to create an altered immune response directed at the covering of nerves in your body, called myelin, says Dr. Krupp. “The two main elements leading to MS have to do with a person’s genetics and with environmental factors that a person has been exposed to,” she says. It’s not as simple as identifying if you carry a certain genetic mutation, though: There are more than 200 genes involved in the disturbed immune response that triggers MS.
Why Did My MS Happen Suddenly?
If it feels like your condition popped up out of nowhere, join the club. “A lot of patients say, ‘I was doing fine and then all of a sudden, these symptoms developed,’” says Dr. Krupp. The truth, though, is that the biologic underpinnings of the disease probably happen within the first year of life—they just aren’t visible until something triggers your first MS event.
What Type of MS Do I Have?
There are four categories of MS, and they’re all a bit of a mouthful: relapsing-remitting, secondary-progressive, primary-progressive, and progressive-relapsing. Most people fall into the first two groups. “Relapsing MS is more common—85% of people start out that way, where a clinical event occurs, there’s recovery, and then if left untreated, another event occurs,” says Dr. Krupp. In all cases, the type of MS you have is most likely classified based on motor symptoms, such as difficulty walking or with balance.
How Is MS Diagnosed?
After ruling out other possible causes for your symptoms, your doctor will likely want to perform an MRI—a body scan that can reveal what are called “lesions” on your brain and/or spinal cord. These are areas that sometimes look white where the rest of the brain looks grey on specific MRI sequences,” says Dr. Krupp. “In addition, your doctor may do a spinal tap, looking for certain proteins call oligoclonal bands in the spinal fluid.” The presence of these proteins indicated inflammation, possibly from multiple sclerosis.
Am I Going to Die from MS?
Well, shoot. You survived 9/11, you’ve dodged COVID-19, and now your doc says you have MS? Have you used up your nine lives? Rest easy, MS is not going to kill you, says Dr. Krupp. Part of the fear, she says, may be due to people who were diagnosed before there were any meaningful treatments available. Their symptoms have progressed to a point where, if they get another illness—say, pneumonia—on top of MS, their bodies may be too weak to fight it off. But MS itself is not a killer.
Is There a Cure for My MS?
Not yet, but scientists are getting closer. Meanwhile, medications are making it easier than ever to manage symptoms. Drugs known as disease-modifying therapies work by disrupting a chain reaction that leads to inflammation and the immune system response. “These therapies may prevent new lesions or the expansion of existing lesions,” says Dr. Krupp. “And they may prevent relapses or MS attacks.” Current treatments also aim to slow the loss of brain volume—something that naturally occurs with age but happens at a faster pace in people with MS.
Will I Need a Wheelchair?
Forget the images of people with MS in wheelchairs we used to see in the past. MS isn’t like that anymore. “Are some people in wheelchairs? Yes, of course,” says Dr. Krupp. Older people who were diagnosed in the pre-treatment era may have seen their disease progress much further, she explains. “But if you’ve just been diagnosed, you shouldn’t be thinking about ending up in a wheelchair, because you’re probably not,” she says. “What you do need to think about are positive ways to enhance your health.” Exercising, eating healthy, and taking the meds your doctor prescribes top the list.