Multiple sclerosis (MS) is a chronic, sometimes disabling, disease of the central nervous system affecting approximately 400,000 people in the United States, according to the National Multiple Sclerosis Society. It affects two to three times as many women as men. MS develops more often in Caucasians than in other races. About 200 new cases of MS are diagnosed in the United States every week.
The cause of MS is still unknown, but most researchers think it results from an abnormal response by the body’s immune system. Some researchers believe this abnormal immune response could be caused by a virus, although it is unlikely that there is just one virus responsible for triggering the condition. Researchers do know that MS is not contagious. And while it is not an inherited disease, genetic susceptibility plays a role. There is a higher risk for MS in families where it has already occurred. Other possible causes include environmental triggers such as exposure to toxins and heavy metals, as well as low levels of vitamin D.
It is believed that MS is an autoimmune disease. In MS, the immune system—for reasons still not understood—attacks and destroys myelin and the oligodendrocytes(oligo, few; dendro, branches; cytes, cells) that produce it. Though the body usually sends in immune cells to fight off bacteria and viruses, in MS they misguidedly attack the body’s own healthy nervous system, thus the term autoimmune disease.Rheumatoid arthritis and lupus are other types of autoimmune diseases.
In multiple sclerosis, these misdirected immune cells (certain types of lymphocytes, T-cells and killer cells) attack and consume myelin, damaging the myelin sheath—the fatty insulation surrounding nerve cells in the brain and spinal cord. Myelin acts like the rubber insulation found in an electric cable and facilitates the smooth transmission of high-speed messages between the brain and the spinal cord and the rest of the body. As areas of myelin are affected, messages are not sent efficiently or they never reach their destination.
Eventually, there is a buildup of scar tissue (sclerosis) in multiple places where myelin has been lost; hence the disease’s name: multiple sclerosis. These plaques or scarred areas, which only are a fraction of an inch in diameter, can interfere with signal transmission. The underlying nerve also may be damaged, further worsening symptoms and reducing the degree of recovery. The disease can manifest itself in many ways. Sometimes the diseased areas cause no apparent symptoms, and sometimes they cause many; this is why the severity of problems varies greatly among people affected with MS.
Multiple sclerosis usually strikes in the form of attacks or exacerbations. This is when at least one symptom occurs, or worsens, for more than 24 hours. The symptom(s) can last for days, weeks, months or indefinitely.
The most common pattern of multiple sclerosis is relapsing-remitting MS. It is characterized by periods of exacerbation followed by periods of remission. The remissions occur because nervous system cells have ways of partially compensating for their loss of ability. There’s no way to know how long a remission will last after an attack—it could be a month or it could be several years. But disease activity usually continues at a low, often almost indiscernible level, and MS often worsens over time as the signal-transmitting portion of the cells—the axons—are damaged.
Most commonly, multiple sclerosis starts with a vague symptom that disappears completely within a few days or weeks. Temporary weakness, tingling or pain in a limb can be a first sign. Ataxia (general physical unsteadiness and problems with coordination), temporary blurring or double vision, memory disturbances and fatigueare also symptoms that can appear suddenly and then vanish for years after the first episode, or in some cases never reappear.
The symptoms of MS vary greatly, as does their severity, depending on the areas of the central nervous system that are affected. Most people suffer minor effects. The disease can, however, completely disable a person, preventing him or her from speaking and walking in the most extreme cases.
The bodily functions that are commonly affected by MS are:
- speech and swallowing
- bladder and bowel control
- cognitive function (thinking, concentration and short-term memory)
A varying degree of dysfunction may occur within these general areas. For instance, one person may suffer blurred vision while another may suffer double vision. Or one person may suffer from tremors while another will experience clumsiness of a particular limb.
Specific symptoms associated with MS can include:
- fatigue: a debilitating kind of general fatigue that is unpredictable and out of proportion to the activity; fatigue is one of the most common (and one of the most troubling) symptoms of MS.
- cognitive function: short-term memory problems and difficulty concentrating and thinking, typically not severe enough to seriously interfere with daily functioning, although sometimes it does. Judgment and reasoning may also be affected.
- visual disturbances: blurring of vision, double vision (diplopia), optic neuritis, involuntary rapid eye movement and (rarely) total loss of sight.
- balance and coordination problems: loss of balance, tremor, unstable walking (ataxia), dizziness (vertigo), clumsiness of a limb and lack of coordination.
- weakness: usually in the legs.
- spasticity: altered muscle tone can produce spasms or muscle stiffness, which can affect mobility and walking.
- altered sensation: tingling, numbness (paresthesia), a burning feeling in an area of the body or other indefinable sensations.
- abnormal speech: slowing of speech, slurring of words and changes in rhythm of speech.
- difficulty in swallowing (dysphagia).
- bladder and bowel problems: the need to urinate frequently and/or urgently, incomplete emptying or emptying at inappropriate times, constipation and loss of bowel control.
- sexuality and intimacy: impotence, diminished arousal and loss of sensation.
- pain: facial pain and muscle pains.
- sensitivity to heat: this often causes symptoms to get worse temporarily.
Though these are some of the symptoms commonly associated with MS, not all people with MS will experience all of them. Most will experience more than one symptom, however. There is no typical case of MS. Each is unique.
Today, life expectancy for those with MS is normal or close to normal.
Most people with MS begin experiencing symptoms between the ages of 20 and 50. But initial symptoms may be vague, may come and go with no pattern or may be attributed to other factors or conditions. For instance, a woman who experiences sudden bouts of vertigo once every few months may explain away the symptom by linking it to her menstrual cycle. Or, perhaps, someone who suddenly has a bit of blurry vision may blame too many hours at the office.
Diagnosing MS involves several tests and a lot of discussions with several types of health care professionals. You can expect a complete physical examination, a discussion of your medical history and a review of your past and/or current symptoms.
You should pay attention to any symptom suggestive of MS. Early diagnosis of MS is important because a new generation of treatments introduced in the 1990s can reduce the frequency and severity of MS attacks. In fact, research has prompted health care professionals to change the diagnostic criteria to treat more cases of MS as early as possible.
At this point, there are no symptoms, physical findings or tests that alone can definitively show that a person has MS. Instead, physicians use several strategies, including a medical history, neurologic exam, tests such as visual evoked potentials (VEPs) and spinal taps and imaging tests such as magnetic resonance imaging (MRI), to make a diagnosis.
For a diagnosis of MS, a health care professional must:
- Discover evidence of damage in at least two separate areas of the central nervous system (CNS), including the brain, spinal cord and optic nerves AND
- Find evidence that the damages occurred at least one month apart AND
- Be able to rule out all other possible diagnoses
In 2001, an international panel of experts convened to update the diagnostic criteria to include guidelines for using MRI, VEP and cerebrospinal fluid analysis to confirm an MS diagnosis faster. Health care professionals can use these tests to look for a second area of damage in a person who has experienced only one MS-like attack. These criteria were further revised in 2005 and again in 2010, termed the Revised McDonald Criteria, to speed up the diagnostic process even more.
The specific tests that help make an MS diagnosis include the following:
- MRI: Health care professionals may use MRI to scan the brain for lesions indicating early evidence of damage, in addition to other tests. An MRI is painless and noninvasive. If you need one, a health care professional will have you lie on your back on a table. The table will be pushed into a tube-like structure and detailed pictures of your brain and, sometimes, spinal cord, will be taken. These images are able to show scarred areas of the brain.Bear in mind that a normal MRI does not ensure that a person does not have MS. About 5 percent of MS patients have normal MRIs, according to the National Multiple Sclerosis Society. However, it is important to note that the longer a person has a normal MRI, the more important it becomes to look for a diagnosis other than MS.
- Visual evoked potential tests (VEPs): VEPs measure how quickly a person’s nervous system responds to certain stimulation. These tests offer evidence of neurological scarring along nerve pathways that may not show up during neurologic exams. Evoked potential tests are painless and noninvasive. A health care professional or technician will place small electrodes on your head to monitor your brain waves and your response to auditory, visual and/or sensory stimuli. The time it takes for your brain to receive and interpret messages is a clue to your condition.
- Spinal tap: A spinal tap tests cerebrospinal fluid (fluid surrounding the brain and spinal cord) for substances that indicate strong immune activity in the central nervous system and helps rule out viral infections and other conditions that can cause neurological symptoms similar to those of MS. If you have this test, you will likely be given an injection of local anesthesia. Some people experience a transient headache and nausea after the test.
- Blood tests: These may help rule out other potential causes of symptoms, such as Lyme disease, lupus and AIDS.
If you are diagnosed with MS, it will almost certainly be one of four patterns:
- Relapsing-remitting MS: This is the most common pattern of the disease at the time of diagnosis, affecting 85 percent of patients at this stage. People with this pattern of MS experience clearly defined exacerbations or relapses, followed by partial or complete remissions (or recovery periods) where the disease stops progressing.
- Secondary progressive MS: According to the National Multiple Sclerosis Society, before the introduction of disease-modifying drugs, about half of individuals with relapsing-remitting MS experienced a gradual worsening of symptoms with or without occasional flare-ups, minor remissions or plateaus within 10 years of initial diagnosis. This form of MS is called secondary progressive MS. At this point, the long-term data are not available to determine whether or not the changeover in diagnosis from relapsing-remitting to secondary progressive MS is delayed by treatment.
- Primary progressive MS: This pattern of MS is characterized from the onset by a nearly continuous worsening of the disease, with no distinct relapses or remissions. There may be temporary plateaus with minor relief from symptoms but no long-lasting relief. About 10 percent of people with MS have primary progressive MS.
- Progressive-relapsing MS: This form of the disease is relatively rare and takes a progressive course from the onset but also is characterized by obvious acute attacks, with or without recovery. In contrast to relapsing-remitting MS, the periods between relapses are characterized by continuing disease progression. About 5 percent of people with MS have progressive-relapsing MS.
MS varies so greatly in each individual that it is hard to predict the course the disease might take. However, some studies show that people who have few attacks in the first five years following a positive diagnosis of MS, long intervals between attacks, complete recoveries and attacks that are sensory only in nature generally have a less debilitating form of the disease.
On the other hand, people who have early symptoms that include tremors, lack of coordination or frequent attacks with incomplete recoveries generally have a more progressive form of MS. These early symptoms indicate that more myelin (the fatty insulation surrounding nerve cells in the brain and spinal cord) has been damaged.
Since MS generally strikes a woman during childbearing years, many women with the disease wonder if they should have a baby. Studies show that MS has no adverse effects on the course of pregnancy, labor or delivery; in fact, symptoms often stabilize during pregnancy.
Although MS poses no significant risks to a fetus, physical limitations of the mother may make caring for a child more difficult. Also, women with MS who are considering having a child should discuss with their health care professionals which drugs to avoid during pregnancy and while breastfeeding. The disease-modifying drugs are not recommended during breastfeeding because it isn’t known if they are excreted in breast milk.
There is no cure for MS, but some agents can modify the course of the disease, manage symptoms and treat exacerbations.
These drugs include the following:
- Fingolimod (Gilenya): Gilenya was FDA-approved in 2010 to help reduce frequency of attacks and to delay physical disability in people with relapsing forms of MS. It is a new class of medication called a sphingosine 1-phosphate receptor modulator, which is thought to reduce damage to nerve cells by trapping certain white blood cells within the lymph nodes, preventing them from entering the brain and spinal cord. Gilenya is given by mouth once a day. Gilenya is not recommended for people with preexisting heart conditions.
- Teriflunomide (Aubagio): Aubagio became the second oral disease-modifying treatment for MS when it was FDA-approved in 2012. The once-a-day tablet may be prescribed to treat adults with relapsing forms of MS. Aubagio inhibits the function of immune cells that may contribute to MS. It can inhibit a key enzyme required by white blood cells (lymphocytes), reducing the proliferation of T and B immune cells active in MS and can also inhibit production of immune messenger chemicals by T cells. Common side effects include diarrhea, abnormal liver tests, nausea and hair loss. It is not recommended for pregnant women or people with liver problems.
- Interferon beta-1b (Betaseron, Extavia): Interferon beta-1b, which was introduced in the 1990s, is prescribed to reduce the frequency of exacerbations of relapsing forms of MS, including secondary-progressive MS patients who continue to experience acute attacks or relapses. Betaseron and Extavia are also approved for patients who have experienced a first episode and who have an MRI result consistent with MS. Betaseron and Extavia are injected every other day under the skin. Common side effects include flu-like symptoms (which lessen over time) and reactions at the injection site. Rare side effects include elevated liver enzymes and depression.
- Interferon beta-1a (Avonex, Rebif): Both Avonex and Rebif are approved by the U.S. Food and Drug Administration (FDA) for people with relapsing forms of MS to decrease the frequency of exacerbations and slow progression of disability. Avonex is injected once a week, usually in the large muscles of the thigh, upper arm or hip. Rebif is injected three times a week. The EVIDENCE trial, which compared Avonex and Rebif, found that patients treated with Rebif were more likely to be relapse-free at 24 and 48 weeks than those treated with Avonex. Side effects of both drugs include flu-like symptoms after injection, which lessen over time, and rarely, seizures, depression, mild anemia or liver problems.
- Glatiramer acetate (Copaxone): Copaxone is FDA-approved to reduce the number of relapses in people with relapsing-remitting MS and for those who have experienced a first clinical episode and have MRI results that point to MS. While interferon beta-1a and interferon beta-1b work by dampening the immune system, glatiramer acetate works differently to influence the immune system and its cells. Copaxone is injected daily. Common side effects include injection site reactions, runny nose, tremor, unusual tiredness and weight gain. Rarer side effects include anxiety, chest tightness, shortness of breath and flushing.
- Mitoxantrone (Novantrone): A cancer drug that is part of a group of medicines called antineoplastics, Novantrone helps in the treatment of MS by suppressing the activity of B cells, T cells and macrophages that are thought to attack the myelin sheath. Based on the results of a series of European studies done on Novantrone over 10 years, the FDA approved the drug for reducing neurologic disability and/or the frequency of relapses in people with secondary progressive MS, progressive-relapsing MS and worsening relapsing-remitting MS. Novantrone is taken by injection once every three months. Common side effects, which may go away as your body adjusts to the medication, include nausea, hair loss and menstrual irregularities. Rarer and potentially more serious side effects include fever or chills, lower back or side pain, stomach pain and heart problems (therefore, patients should be screened for heart disease before they start taking Novantrone).
- Natalizumab (Tysabri): Tysabri was FDA approved in 2006 to help reduce the frequency of attacks in people with relapsing forms of MS. It should be used alone, not in combination with any other medications. The drug works by blocking potentially damaging immune cells from crossing into the brain and spinal cord. Tysabri is given intravenously once every four weeks. It is usually reserved for patients who have not responded well to other MS medications. Common side effects include headache, pain in your arms or legs, tiredness, joint pain, depression, diarrhea and pain in the stomach area. More serious side effects include increased risk of infection and increased risk of progressive multifocal leukoencephalopathy (PML), a viral infection of the brain that usually leads to death or severe disability.
Note: Talk to your health care provider if you experience side effects from one of the above-mentioned drugs. There may be strategies you can use to minimize the side effects; they may abate in a few months or you may be able to switch to one of the other drugs and avoid the side effects. If you stop taking the drug, it may seem like there are no consequences, but MS damage can occur steadily and silently for long periods before the next attack.
Steroids such as methylprednisolone often are prescribed to treat acute attacks of MS, whether the person is taking a disease-altering drug or not. These drugs speed the recovery from the acute attack but do not stop disease progression. Long-term use of steroids also has many side effects, including ulcers, weight gain, acne, cataracts, osteoporosis and diabetes.
Chemotherapies that suppress the immune system broadly and were originally designed to treat certain cancers are sometimes used for progressive MS. In addition to Novantrone, cyclophosphamide (Cytoxan) and azathioprine (Imuran) are used similarly but do not have approval from the FDA for treatment of MS.
A process in which the antibodies are filtered from a person’s blood called plasmapheresis may be successful, particularly when used in combination with immunosuppressants for short-term treatment of some progressive patients. However, its use is controversial.
For symptom management, health care professionals have an arsenal of medications. For example, baclofen (Lioresal) and tizanidine (Zanaflex) are antispasticity medications often prescribed to relieve muscle spasms, cramping and tightness of muscles in MS patients. Each has varying side effects in varying degrees. Your health care professional should be able to find one that provides comfort and relief for almost any symptom you have.
Although currently unapproved by the FDA for MS treatment, a growing number of health care providers now consider use of the botulinum toxin (Botox) as an effective short-term treatment option for certain types of MS-related problems, such as muscle stiffness and urinary problems, when first-line treatment is ineffective.
Nonmedical strategies for coping with MS
An MS diagnosis doesn’t have to stop your life, but you will have to learn—and practice—strategies for managing fatigue and dealing with other temporary or long-term disabilities. Physical and occupational therapists can help you develop strategies and select assistive devices to navigate the workplace and home environment.
Physical therapy usually focuses on walking (including using ambulatory aids correctly), balance and stability in standing, maintaining range of motion and functional strengthening. Occupational therapy focuses more on ways to accomplish specific everyday tasks at home and work, as well as managing your energy. Some programs include techniques to improve memory and concentration.
Check your health plan for coverage. Not all cover physical and occupational therapy.
Symptoms that affect your memory and concentration may be the most painful to talk about. But acknowledging these symptoms and discussing them with health care professionals and your family are the first steps toward getting them under control. The National Multiple Sclerosis Society can direct you toward support groups and publications that can help. Visit its website at www.nationalmssociety.org.
Things you can do at home to manage fatigue or limited mobility include:
- Declutter your living areas.
- Divide household tasks more equitably with family members.
- Simplify tasks like cooking so they are less stressful. For example, cook more frozen vegetables or freeze individual servings of a meal, so you can give yourself time off from meal preparation.
- Make tasks less fatiguing. For example, put a table and chair in the kitchen so you can sit while cutting or stirring.
- Identify and abide by your priorities. If it’s important for you to continue working, take some shortcuts with household tasks, or eliminate some of them.
- Cut back on tiring leisure activities, or make energy-conserving adaptations (such as planting a smaller garden).
- Minimize or combine trips.
At work you may want to try the following:
- Manage your workload to accommodate fatigue. For example, if you feel good in the morning but tire rapidly in the afternoon, do your most demanding work in the morning.
- Ask your employer about flex time.
- Consider multiple short breaks instead of an hour-long lunch. Perhaps a 30-minute lunch and two 15-minute breaks.
- When you’re having trouble concentrating, close your office door or take your work to a quiet area, if possible.
“Journaling” can also be a helpful coping strategy. A written or recorded account can help you keep track of when symptoms occur, the management tools that work best for specific symptoms, your medication schedule and many other issues related to your condition. Recording your thoughts and feelings may also be helpful to you. However, it is important to not get carried away and obsess over each little feeling or sensation.
Exercise can be therapeutic and is at least as important for women with MS as for other women. If you have MS, the last thing you want is to develop other health problems—such as obesity, diabetes or heart disease.
People with MS, however, should not “go for the burn” during exercise because overheating can trigger symptoms and worsen fatigue. Some women with MS enjoy exercising in a cool pool, but others find that the bother of driving and changing twice is too fatiguing. A physical therapist can help you design an appropriate exercise program.
No matter how much you exercise, how healthful your diet is or how well you take care of yourself, there is no way to prevent multiple sclerosis (MS). It affects people randomly. But it also is somewhat manageable. If detected early, medications may slow the progress of the disease and the severity of symptoms.
There is now preliminary evidence suggesting that higher vitamin D levels are associated with a decreased risk of MS. Research published in the Journal of the American Medical Association found that among white men and women, the risk of multiple sclerosis decreased by 41 percent with every increase of 20 ng/ml above 24 in vitamin D levels. And previous studies, including one done on women who took vitamin D supplements, also show a connection between higher vitamin D levels and lower risk of MS.
Other research suggests that ultraviolet radiation from the sun (vitamin D is synthesized in the body as a result of ultraviolet radiation from the sun) may dampen the immune attack, and that people who live closer to the equator—and therefore, get more sun exposure—are less likely to get MS. This growing body of research on the link between vitamin D and risk for MS may help explain this phenomenon. The Food and Nutrition Board at the Institute of Medicine recommends 600 international units (IU) of vitamin D for people ages 1 to 70 and 800 IU for those over 70. Neurologists often recommend much higher levels, but 4,000 IU is considered the upper level intake without increasing health risks.
Facts to Know
- Nearly 200 people in the United States are diagnosed with multiple sclerosis (MS) every week. There are 400,000 Americans with MS, according to the Multiple Sclerosis Society.
- Most people with MS are diagnosed between the ages of 20 and 50.
- Two to three times as many women as men develop MS.
- The progress, severity and specific symptoms of MS in any one person cannot be predicted.
- Symptoms of MS are unpredictable and vary greatly from person to person.
- MS is not contagious or fatal. While quality of life is often changed for those diagnosed with MS, the disease does not significantly affect length of life.
- Although there are no drugs to cure MS, treatments are available that can alter the course of the disease. Many symptoms can be treated and managed successfully.
- Multiple sclerosis is Greek for “many scars” which aptly describes the manner in which the disease manifests itself—as scars or plaques on the brain.
- Myelin is a substance made of fat and protein that helps speed messages through the central nervous system. Demyelination is the destruction of that substance. When myelin is destroyed, the messages from the brain to the rest of the body are slowed or destroyed. This results in impaired function and the symptoms of MS.
- Genetics play a role in the development of MS, but the disease is not directly inherited. In other words, you have an increased chance of developing MS if a relative has the disease.
- What will happen to me if I am diagnosed with MS?Since this disease affects people so differently, it is impossible to predict. It is important to remember that most people with MS do not end up in a wheelchair, and life expectancy is normal or near normal. About 85 percent of people initially diagnosed with MS have relapsing-remitting MS, characterized by temporary attacks followed by periods of remission. About half those diagnosed with relapsing-remitting MS develop secondary progressive MS, in which there is a worsening of symptoms with or without occasional flare-ups and minor remissions. About 20 percent of those diagnosed will do well with no major treatments, but no one knows who they are up front. That can only be determined after many years of observation.
- What are the symptoms?MS affects each person differently. Symptoms are a direct result of demyelination—the destruction of myelin, the substance made of fat and protein that helps speed messages through the central nervous system. When myelin is destroyed, the messages from the brain to the rest of the body are either slowed or destroyed. This results in impaired function and symptoms associated with MS, which can include difficulty walking, unusual fatigue, vision loss, strange tactile sensations like numbness or weakness, tremors, a lack of coordination, slurred speech, sudden paralysis and bladder dysfunction.Complications that are a result of the primary symptoms are often called secondary symptoms—urinary tract infections due to bladder dysfunction, for example.
- Other secondary symptoms include poor postural alignment and trunk control, decreased bone density (increasing risk of fracture) and shallow, inefficient breathing. Paralysis can lead to the secondary symptom of pressure sores. While secondary symptoms can be treated, the goal is to prevent them by treating the primary symptoms.There is a third classification of symptoms—the social and psychological effects. People with MS often become depressed. Psychologists, psychiatrists and social workers can help treat these symptoms.It is important to remember that many MS symptoms can be effectively managed and complications avoided with regular care by a neurologist and other health professionals.
- Is there any treatment for MS?There is no cure for MS, but there are medications that may reduce disease activity in relapsing MS. These include Avonex, Rebif, Betaseron and Extavia, all of which are injectable. In addition, the drug Copaxone is used for the relapsing-remitting form of MS and for those who have experienced a first clinical episode and have MRI results that point to MS, Tysabri is used for the treatment of relapsing forms of the disease in people who have not responded well to other therapies, and Gilenya is used to reduce frequency of relapses and to delay physical disability in people with relapsing MS. In people with progressive MS, Novantrone can be used to reduce disability and the frequency of relapses in patients with secondary-progressive, progressive-relapsing or worsening relapsing-remitting MS. However, the lifetime dose of Novantrone is limited due to cardiac toxicity.Many aspects of MS can be effectively managed. For example, exacerbations can often be treated successfully with steroids. These drugs reduce inflammation at the site of new demyelination, allowing you to return to normal functioning more quickly than if they were not used. However, steroids have not been proven to have any long-term effect on the course of the disease and do have severe side effects. Also, physical and occupational therapy (rehabilitation) may help improve impaired functions. Counseling may have a positive effect on the psychological toll the disease takes on a person and her family.
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