Want to Know All About MS? Start Here
If you or your loved one has received a diagnosis of multiple sclerosis (MS), you’re not alone. According to a landmark study published in the journal Neurology, an estimated 1 million people in the United States have MS—a number that’s two times higher than previous estimates.
“Many people find it helpful to start by gathering the facts—learning as much as they can about MS and getting answers to the most commonly asked questions,” says Hope Nearhood, the director of MS Information and Resources at the National Multiple Sclerosis Society (NMSS).
Multiple sclerosis is a disease that occurs when the immune system mistakenly attacks healthy parts of your central nervous system, which includes your brain, spinal cord, and optic nerves.
“This attack is aimed at the myelin coating around nerve fibers [axons], the cells that make myelin [oligodendrocytes], and the nerve fibers under the myelin coating,” explains Nearhood.
“The myelin coating around each nerve fiber serves as insulation,” she continues, “much like the plastic coating on an electrical wire. This helps to ensure the efficient transmission of nerve impulses, which are messages between the brain and other parts of the body.” When myelin or nerve fibers are damaged or destroyed by MS, messages in the central nervous system are altered or stopped completely, which can result in various neurologic symptoms.
MS is unpredictable—for some people, it can be easily managed, and for others, it can be debilitating or disabling.
There are four main courses of MS.
Clinically Isolated Syndrome (CIS)
CIS is when a person experiences MS or MS-like symptoms for at least 24 hours. Sometimes, this describes a person’s first symptom. But not everyone who experiences CIS develops MS.
People with a new neurologic symptom of CIS are typically referred for an MRI (magnetic resonance imaging). If the MRI detects brain lesions, the person is more likely to go on to develop MS. Early treatment with disease-modifying drugs may slow the disease’s progression.
Relapsing-Remitting Multiple Sclerosis (RRMS)
This is the most common type, affecting around 85% of people first diagnosed with MS. RRMS is marked by attacks or relapses of new, increasing, or worsening symptoms that correspond with new brain or spinal cord lesions, followed by periods of remission or recovery.
Secondary Progressive Multiple Sclerosis (SPMS)
For some people, RRMS turns into SPMS, which is characterized by worsening neurologic function that, over time, leads to disability. This can occur with or without relapses or MRI evidence of disease activity.
Primary Progressive Multiple Sclerosis (PPMS)
Only about 15% of people with MS have PPMS, in which there’s little to no cycle of relapses and remission. Instead, the person’s neurological function and disability gradually and steadily worsen.
Regardless of which type you’ve been diagnosed with, MS is unpredictable. There’s no way to anticipate exactly how you’ll experience it over time.
The damage to the myelin from MS can bring on a wide range of symptoms. More common symptoms include:
- Depression and/or anxiety
- Vision issues, such as blurred vision, skewed color vision, and eye pain with movement
- Numbness or tingling in the face, body, or limbs
- Dizziness or vertigo
- Walking/balance issues
- Bladder dysfunction
- Trouble sleeping
- Trouble concentrating
- Sexual dysfunction
- Heat intolerance
- A squeezing sensation around the torso (the “MS hug”)
- Muscle spasms, called spasticity, which is commonly in the legs
- Muscle weakness
There are also some less-common MS symptoms, such as:
- Breathing issues
- Hearing loss
- Loss of sense of taste
- Speech problems
- Swallowing issues
“The symptoms of MS can vary from person to person and within the same person from day to day,” Nearhood says.
The exact cause of MS is unknown. “Research to date has not found a uniform cause that is consistent with all patients with MS,” says Kalina Sanders, M.D., a neurologist based in Jacksonville, Florida.
Research to discover potential causes is ongoing, but a combination of factors are thought to play a role, including:
- Immunologic factors. For instance, an abnormal immune response in the body’s T cells and B cells can trigger the damage to the central nervous system.
- Environmental factors. Vitamin D deficiency, obesity, smoking, and even geographic location can play roles. People who live farther from the equator appear to be more likely to develop MS.
- Infections. This includes past exposure to viruses. The Epstein-Barr virus, in particular, has been linked to the onset of MS, although there’s no evidence that the virus actually causes the disease.
- Genetic factors. MS is not known to be passed down from one generation to another, but there may still be a genetic component that increases risk.
It’s important to note that having certain MS risk factors doesn’t mean a person will go on to develop MS.
“Scientists still don’t understand why genetic factors and risk factors combine in some individuals and cause MS to develop, so it’s important to continue to research these factors to determine how they interact,” Nearhood says. “The goal one day is to be able to identify people at higher risk early so screening and preventive measures can be put in place.”
Sanders adds that this “research is important because, if the exact cause is identified, it could result in more targeted treatments—or even the cure.”
There’s no one test to diagnose or rule out MS, which makes it tricky to determine whether a person has the disease. According to results from a study published in May 2019 in the journal Multiple Sclerosis and Related Disorders, nearly 1 in 5 people with MS who participated were misdiagnosed initially.
“There are many other conditions that produce similar symptoms to MS, so those need to be ruled out before a diagnosis of MS can be confirmed,” explains Nearhood.
As a result, various information and tests are used to diagnose MS, including:
- Detailed medical history
- Comprehensive neurologic exam
- Spinal tap
- Blood work
While the process of exams and testing for MS can be quick for some, it can be time-consuming for others—though there’s hope for improving the path to diagnosis. “Our understanding of the disease and its appearance on MRI has increased over time, and we are now able to diagnose MS sooner than in years past,” Sanders says.
When you experience any new or worsening MS symptoms, this is known as a relapse—which can also be referred to as a flare, attack, or exacerbation. “[Relapses] are caused by inflammation in the central nervous system,” Nearhood says. “The inflammation damages the myelin, slowing or disrupting the transmission of nerve impulses and causing the symptoms of MS.”
Exactly what happens during an MS relapse varies from person to person, and no two flares are the same. It could only involve one symptom or generally be mild; or it can involve multiple symptoms that affect your ability to function properly.
In order to be considered a true relapse, any new or worsening symptoms must meet the following criteria:
- The symptoms last at least 24 hours, though can last anywhere from a few days to months at a time.
- There have been at least 30 days between relapses.
- The symptoms occur without other potential causes, like infection.
Most people recover after a flare, though it can take time—typically between two or three months, but sometimes up to a year. And results from a study published in November 2019 in Multiple Sclerosis Journal found that if symptoms are still present 12 months after a severe relapse, that may contribute to the eventual development of long-term disability.
“If someone is experiencing new symptoms or worsening of old symptoms, they should connect with their MS healthcare provider,” Nearhood says. “Seek emergency care if the attack is severe and requires immediate attention.”
After a flare, if you continue to experience symptoms that don’t go away, it could be a sign that your MS is progressing, adds Nearhood. Everyone with MS should be seen for a neurological exam and MRI at least yearly, even if they haven’t had a recent relapse or concern.
“Being able to characterize the course of the disease at different points in time allows someone with MS and their MS care provider to be able to discuss treatment options and expected outcomes,” says Nearhood.
Many people with MS are prescribed disease-modifying drugs to help slow the progression of the disease and lessen the frequency and severity of relapses. According to a study published in May 2021 in Multiple Sclerosis Journal—Experimental, Translational and Clinical, early treatment with these drugs may help improve recovery from a relapse and, in turn, help prevent long-term disability.
“[A person’s] disease activity in the first two to five years can help give us an idea of what the future will look like for an individual patient,” Sanders says. “However, we do know that the early and consistent use of disease-modifying therapies can change the course of the disease for most people.”
A variety of therapies have been approved for treating MS, and treatments can be administered in different ways: orally, as an injection, or via intravenous (IV) infusion. You’ll work together with your MS care team to develop the best possible treatment plan that suits your individual needs and preferences. In addition to disease-modifying therapy, you may be prescribed medications to help address symptoms that you experience during a flare.
Your MS management plan may also include other steps, like lifestyle modifications, talk therapy, rehabilitation, or complementary and alternative treatments to help you control your MS and maintain the best possible quality of life.
Certain lifestyle adjustments can help you stay on top of your MS and your overall health. The following steps are a good place to start.
Eat a Healthy Diet
Although there’s no special diet for MS, the results of a small study published in 2019 in the journal Disability and Rehabilitation suggest that people with MS do feel as if their diet affects their symptoms. Eating sugar, meat, or fatty foods were linked to worsening symptoms. Plus, eating a diet focused on nutrient-dense foods can help you maintain a healthy weight, improve energy levels, and promote overall health.
People with MS tend to be less active than those without the condition—and finding ways to move can be a challenge if you’re experiencing mobility issues. But taking time to exercise regularly can improve your overall health and reduce the stress that comes with managing a chronic condition like MS.
Not sure where to start? Follow these exercise recommendations from the NMSS based on your abilities.
MS can bring on a host of sleep-related issues, from insomnia to nighttime bathroom breaks. But getting a good night’s sleep can boost cognitive function—and help contribute to overall health and wellness. Take steps to improve your sleep hygiene:
- Create a relaxing nighttime routine free of screens.
- Avoid activities like working out, eating large meals, or drinking caffeine or alcohol in the hours leading up to bedtime.
- Keep your bedroom cool, dark, and quiet.
Quit Unhealthy Habits
It’s a good idea to avoid alcohol, since even one drink could affect your balance and coordination and increase the need for more bathroom breaks. And if you smoke, quit: Smoking can increase the likelihood of developing MS, and the disease tends to progress more quickly for smokers.
Work to Identify Triggers
Take steps to identify any factors that could be triggering your MS symptoms. “Heat from hot or humid weather or exercise can further impair demyelinated nerves, suddenly making MS symptoms feel worse,” adds Nearhood.
There’s no cure for MS—it’s a chronic, lifelong disease. Even though it can be debilitating for some, most people with MS never become severely disabled, according to the NMSS. And for those who do develop difficulty with mobility, using assistive devices like canes, crutches, or wheelchairs can help them maintain their independence and function.
While research suggests that the lifespan for people living with MS is about seven years less than that of the general population, that’s most likely related to other complications that can be managed by staying on top of your overall health.
“To optimize long-term outcomes,” Nearhood says, “[you] should seek care from a comprehensive healthcare team that employs a combination of disease management strategies, including disease-modifying therapies to help prevent the progression of the disease, symptom management strategies, and a focus on overall health and wellness to enhance quality of life.”
Educating yourself and staying positive can go a long way, adds Sanders. “MS is a marathon and not a sprint,” he says.
“It will take time to get comfortable with your new normal,” agrees Nearhood. “Positive thinking and a healthy lifestyle are key to living your best life with multiple sclerosis.”
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