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Multiple Sclerosis

M.S. can be an unpredictable neurological disease.

Multiple sclerosis (M.S.) is a complex condition. The name refers to the multiple points of sclerosis, or tissue hardening, found in the brain and/or spinal cord in someone with the disease. These form when the immune system attacks healthy nerve fibers and a substance called myelin, a protective coating that surrounds nerve fibers in the brain and spinal cord, according to Johns Hopkins Medicine. Myelin helps your nerve fibers conduct impulses in your body quickly and more efficiently, so you can control your muscle movements and decode sensory information—like what you see or hear—without delay, according to the U.S. National Library of Medicine.

Multiple sclerosis can be an unpredictable disease and affect individuals who have it in different ways. However, learning more about the condition can help you manage and live with it or help you support a loved one who has been diagnosed.

Multiple sclerosis can be an unpredictable disease, affecting the spine and nervous system.

Amanda K Bailey

What is multiple sclerosis (M.S.)?

M.S. happens when someone’s immune system mistakenly attacks their healthy nerve fibers, creating chronic inflammation and damaging myelin, according to the Cleveland Clinic. This process can ultimately prevent your central nervous system from working as it should.

“The central nervous system controls pretty much all our major functions,” Ari Green, M.D., medical director of the Multiple Sclerosis and Neuroinflammation Center at the University of California, San Francisco, tells SELF. “It controls our capacity to move our bodies, our capacity to feel [sensations], coordinate movements, go to the bathroom, and to see.”

As these attacks progress, signs and symptoms of M.S. emerge.

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Signs and symptoms of M.S.

Multiple sclerosis symptoms vary and may change over time. Initially, the most common M.S. symptoms are vision changes and bodily numbness and weakness, Daniel Harrison, M.D., neurologist and director of the University of Maryland Center for Multiple Sclerosis, tells SELF. The symptoms that emerge first depend on where the myelin damage is located—whether it’s in the brain or in the spine. “If there is inflammation in the optic nerve, patients will have difficulty with vision, often accompanied by some pain, especially with eye movement,” Dr. Harrison says. People may notice black spots, have blurred vision, or have difficulty with identifying colors1.

“If the inflammation is in a portion of the spinal cord, typically they’ll have symptoms from that point down,” he says. For example, if there’s inflammation in the middle of your spinal cord, then your legs may feel weak or numb and you might have trouble walking. Inflammation in the brain stem will interfere with your facial and eye movements, in addition to your balance and coordination, so you could experience dizziness. “You could have weakness in the face, slurring of speech, or imbalance and lack of coordination,” explains Dr. Harrison. Because of M.S.’s unpredictable nature, it is hard to offer a complete list of potential symptoms, but here are some other signs, according to Columbia University:

When people have episodes, they experience difficulties with motor and/or sensory skills because their brains and/or nervous systems are struggling to transmit or interpret impulses, explains Dr. Green.

“Typically, these symptoms will present as a very distinct event, with the onset occurring over the course of a few hours or a few days and worsening,” Dr. Harrison says. Symptomatic periods can last anywhere from weeks to months, but many people find their symptoms resolve within eight weeks. The majority of patients will eventually have an M.S. flare-up again, but it’s possible for people to go as long as 12 to 18 months with no symptoms at all. (A smaller subset of people have a different form of the condition that varies from this, which we’ll discuss in a bit.)

But because M.S. is a progressive disease, it’s important to note that true new relapses are marked by the experience of new multiple sclerosis symptoms, according to Dr. Green. “Let’s say a patient notices they have a little bit of weakness in their right hand, but it’s the same weakness every day and it hasn’t changed in 5 or 10 years. Then, they have new weakness in their left hand or new vision loss in their left eye. Well, that's typically a new episode,” Dr. Green says. These new symptoms are indicative of new or worsening damage to myelin. 

But let’s say when that person first had that weakness in their right hand, they also had a weakness in the right leg at the same time. When they recovered, they recovered the strength in their leg, but didn’t quite recover the strength in their hand. This low-grade weakness in their hand would still be classified as a remission, but if the more severe weakness returns without getting worse, it’s what’s known as a pseudo-relapse, Dr. Green explains. (These unfortunately named periods where older multiple sclerosis symptoms return don't do justice to the very real suffering they cause but are an important distinction.)

Usually, pseudo-relapses occur after someone becomes ill. “It’s possible that when a person gets sick, like with a cold or flu, their old symptoms that they had partially recovered from may return,” Dr. Green says. “A lot of patients start to think every time they have a symptom they’re having a relapse, but that's not exactly true,” he says.

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Types of M.S.

There are three main types of multiple sclerosis and all can cause mild to severe symptoms.

  • Relapsing-remitting M.S.: Relapsing-remitting multiple sclerosis is characterized by periods where symptoms dissipate and then new symptoms emerge or previous symptoms reappear worse than they were. The remissions may happen naturally or with treatment and can last weeks, months, or even years. Nearly 90% of people with multiple sclerosis have this form at the time of their diagnosis, according to Johns Hopkins Medicine.
  • Primary-progressive M.S.: Between 10% and 15% of people with multiple sclerosis have primary-progressive M.S., in which patients never experience remissions2. “Instead of having a big episode, people will have a very subtle slow onset of symptoms, progressively worsening over weeks, months, or even years,” Dr. Harrison explains.
  • Secondary-progressive M.S.: If someone is diagnosed with relapsing-remitting multiple sclerosis but no longer has distinct periods of remission, then their condition has progressed to secondary-progressive multiple sclerosis. By its very nature, M.S. is a progressive disease—meaning almost inevitably it will worsen, somehow. For some people, that happens when their disease converts from relapsing-remitting to secondary-progressive—approximately 50% of relapsing-remitting patients are diagnosed with secondary-progressive within 15 years.

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Causes of M.S.

Experts don’t know what triggers M.S. in the body and why the immune system begins attacking the myelin sheathing. “We do know there is definitely a genetic component,” Dr. Harrison says. People with first-degree family members who have M.S. are more likely to develop the condition compared to the general population. However, it’s not as simple as inheriting a gene that causes multiple sclerosis. “At least 150 or up to 200 genes are probably involved in multiple sclerosis. And one’s risk is partially determined by any combination of those genes,” he explains.

While it is unknown what exactly causes M.S., there are a few environmental factors that contribute to its likelihood. Vitamin D deficiency, and contracting the Epstein-Barr virus, is associated with having a higher risk of developing M.S.7 Where you reside also may also play a role. There’s a higher prevalence of M.S. in areas farther from the equator3 (which could have to do with less vitamin D exposure), and in areas with more pollution.

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M.S. diagnosis 

There is no single test that can determine whether someone has multiple sclerosis. Instead, doctors use a combination of factors to rule out conditions that can present similarly to M.S.— certain vitamin deficiencies4, infections5, and other inflammatory disorders. If you see your primary care physician, they may refer you to a neurologist who specializes in brain and nervous system disorders.

Generally, your doctor will go over your medical history and complete a physical exam. After that, you’ll probably go in for an MRI. “That is the number one evaluation we do for multiple sclerosis patients,” Dr. Harrison says. On the MRI, he explains, experts are looking for signs of myelin damage, which docs call lesions. The MRI could also show evidence of older damage to your myelin—most patients will have some of this, indicating that M.S. has been affecting their body longer than they have been experiencing clinical symptoms. In some patients, seeing lesions on the MRI combined with the physical exam will be enough to diagnose M.S.

In order to be officially diagnosed with M.S., patients need to have had at least two episodes of multiple sclerosis symptoms spaced at least one month apart, as well as more than one area of myelin damage, according to Cedars-Sinai. “If the diagnostic criteria cannot be fully met by the exam, the history, and the MRI, we sometimes have to supplement with getting spinal fluid testing done,” Dr. Harrison says.

Multiple sclerosis is most commonly diagnosed in people between 20 and 40 years old. People assigned female at birth are four times more likely to be diagnosed with the condition.

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M.S. treatment 

Multiple sclerosis is a life-long condition that currently has no cure, though there are many treatment options. With relapsing-remitting M.S., doctors generally try to slow the disease from progressing by using a type of medication called disease-modifying therapy, Dr. Harrison explains. “And then we treat the relapses when they happen, as well as managing longer-term symptoms,” he says. There is one M.S. medication used to treat primary-progressive cases. Secondary-progressive M.S., once it converts, is treated similarly to primary-progressive M.S.

Disease-modifying therapies are longer-term M.S. treatments, and there are more than a dozen drugs approved by the FDA for use in relapsing-remitting M.S. “The most important thing is to try and prevent attacks from happening in the first place. That’s where disease-modifying therapies come in. We have many, many, many options,” Dr. Harrison says. “The drugs turn down the immune system in some settings, and block the immune cells from getting into the brain [and attacking],” Dr. Green explains. “And in another set of settings, they target the immune cells that are driving a really significant or important part of the damage or injury [to the central nervous system].” Essentially all the drugs available do both these things, to varying degrees.

The most commonly used disease-modifying therapies are interferon beta medications, which are injected into the skin or muscle. There are other injectables, namely glatiramer acetate, as well as once- or twice-daily pills and medical-professional-administered infusions. Choosing a disease-modifying therapy is dependent on how much immune-system suppression someone can handle: more immunosuppression will lead to fewer relapses, but also stronger side effects. Therefore, for people with milder forms of M.S. and a good prognosis, a milder, less intense M.S. treatment is recommended to reduce potential side effects.

Ocrelizumab, a twice-yearly prescription infusion, is the only FDA-approved medication available to treat primary-progressive M.S. Similar to relapsing-remitting M.S., you also may be prescribed medications to treat individual symptoms, such as fatigue or sexual dysfunction.

Corticosteroids, a type of anti-inflammatory drug, may be used to help reduce symptoms and reduce inflammation during relapses. These steroids are given in very high doses for a very short time, usually three to five days. “What’s happening in the midst of a relapse is that there’s a new area of active inflammation happening somewhere, and we’re trying to stop that inflammation, cut it short and allow for some recovery,” says Dr. Harrison. The steroids can be administered either intravenously, through an infusion, or via pill6.

People with aggressive forms of the disease are generally prescribed stronger treatments. Your doctor may ask about family planning since some M.S. medications are pregnancy safe and some are not, Dr. Harrison explains.

The available therapies are very effective. “If you take the existing treatments that control episodes and prevent attacks, these days we can pretty much get those attack levels down to near zero,” says Dr. Green. However, preventing new attacks doesn’t stop signs and symptoms of M.S. from previous attacks. For day-to-day pain, irritation, and other symptoms, individual medications such as muscle relaxants to help with stiffness, medications to reduce fatigue, or medications to help with specific dysfunctions (like sexual or bladder dysfunction) may also be used on an as-needed basis.

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Living with M.S.

Life with M.S. is not always easy. “Therapies stop new attacks from happening, but they don’t fix the damage that has already occurred,” Dr. Green explains. In the long-term, this existing damage can cause severe mobility issues and some people may need a cane or walker to get around. Long-term complications like sexual dysfunction and significant cognitive effects such as memory problems can also occur. Doctors can’t always predict what course someone’s M.S. will take, but serious complications are not as common as they once were thanks to advances in treatment.

M.S. can also have a significant impact on mental health. As many as 50% of people with multiple sclerosis experience an episode of depression, according to prior research. The depressive symptoms may be caused by the disease itself—behavior is a part of the nervous system—and/or it may be caused by the social and emotional experience of having a chronic illness. “I often tell patients that M.S. is a disconnection syndrome,” Dr. Green says. “It disconnects your brain from other parts of your nervous system and from your body, but it also disconnects people from their loved ones,” he says. It’s crucial to have an open dialogue with your doctor about any mental health effects experienced alongside an M.S. diagnosis, so you can care for your overall well-being.

While M.S. is a progressive and degenerative disease, living with M.S. and having a full life is possible thanks to the excellent treatments available. “Physicians do try and make it so that patients can live as much of a normal life as they can—have families and careers and plan for the future,” Dr. Harrison says. Communicating frequently with your care team—including mental health professionals and physicians—can help ensure that M.S. doesn’t keep you from meeting your goals.

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Managing M.S.

Once you and your doctor have found a treatment course that works for you, managing M.S. from a medical standpoint is pretty straightforward. “For most patients, we will typically be following up maybe twice a year, really just monitoring their condition, monitoring the safety of their medications, and monitoring how effective their medications are,” Dr. Harrison explains. Of course, if a patient is doing worse, or if someone was diagnosed with a more advanced course of the disease, more frequent monitoring might be necessary.

In terms of lifestyle modifications, experts recommend the following:

Exercising as regularly as you can: “One thing I communicate with patients that is as important if not more important than their medication is exercise and activity,” says Dr. Green. In fact, exercise has been shown to be essential for M.S. patients and has been shown to help maintain muscle control and strength. “If you want to improve muscle weakness, you have to practice,” says Dr. Green.

Generally, doctors recommend getting 30 minutes of aerobic exercise three times a week, but this will vary depending on your particular situation, according to the Mayo Clinic. Strength training is also recommended to help maintain muscle mass and muscle strength, as well as to maintain bone density and bone health, the Mayo Clinic says. “One of the long-term problems for people as they get older with a progressive neurological condition is the potential for falls. Doing some strength-related exercises is important,” explains Dr. Green, because preserving bone health can help prevent fractures if a fall occurs. If you’re able to, seeing a physical therapist who can offer guidance about the best exercises for your specific abilities may be helpful.

Caring for your emotional well-being: Experts also recommend continuing to stay engaged in work, family, and your community to maintain your mental health. “Maintaining social relationships, maintaining work, maintaining physical activity are all really highly encouraged to the level that they’re physically able,” Dr. Harrison says.

 While M.S. is a lifelong condition, understanding it, finding the right treatment plan, and having support can help you manage the disease. “It’s always hard to receive a diagnosis like this, but there have been huge strides in treatment and there is just a massive amount of energy and research in this condition right now,” Dr. Harrison says. “Things are only going to get better.”

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  1. Eye and Brain, Optic Neuritis as an Early Sign of Multiple Sclerosis
  2. Science Direct, The Molecular and Clinical Pathology of Neurodegenerative Disease
  3. Nature, Air Pollution Linked to Multiple Sclerosis and Stroke
  4. International Journal of Preventive Medicine, Vitamin B12 Deficiency and Multiple Sclerosis; Is there Any Association?
  5. AIDS, Multiple Sclerosis-Like Illness in Early HIV Infection
  6. Annals of Indian Academy of Neurology, Management of Acute Exacerbations in Multiple Sclerosis
  7. Science, Longitudinal Analysis Reveals High Prevalence of Epstein-Barr Virus Associated With Multiple Sclerosis

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