What Is It?
Multiple sclerosis (MS) is a chronic, sometimes disabling, disease of the central nervous system. In MS, the immune system—for reasons still not understood—attacks and destroys myelin and the oligodendrocytes that produce it.
Multiple sclerosis (MS) is a chronic, sometimes disabling, disease of the central nervous system affecting approximately one in 750 people in the United States, according to the National Multiple Sclerosis Society. It affects three to four times as many women as men. MS develops more often in Caucasians than in other races but recent data from the Kaiser Foundation indicates there is more MS among African Americans than previously thought.
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 triggers include environmental exposures to toxins and heavy metals, as well as low levels of vitamin D. Smoking and obesity may worsen the condition.
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, B-cells and natural 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 fatigue are 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 slightly less than 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.
- Optical coherence tomography (OCT): A relatively new test, OCT is a painless, noninvasive procedure that looks at the retinal structures at the back of the eye. Following an episode of optic neuritis, doctors use OCT to assess the condition of the retinal nerve. People with MS have a different retinal nerve fiber layer than people without MS. Doctors use OCT to learn more about optic neuritis and MS, as well as to get information about disease activity in a person with a suspected MS diagnosis.
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: Secondary progressive MS (SPMS) follows a course of relapsing-remitting MS; according to the National Multiple Sclerosis Society, most people with RRMS eventually transition to the SPMS form, where neurologic function progressively worsens over time. SPMS can be characterized as active or not active, as well as with progression or without progression. Active SPMS consists of relapses and/or new MRI activity. When SPMS is not active, there is no activity. SPMS with progression indicates there is evidence of disease or worsening of symptoms. When it is classified as without progression, the disease is not changing over time.
- 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 15 percent of people with MS have primary progressive 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:
- 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 FDA-approved 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 was approved by the FDA in 1996 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. In 2014, the FDA also approved a new dose of Copaxone that is injected three times per week. 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 in 2000 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 leukemia, 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). This medication is rarely used now.
- Natalizumab (Tysabri): Formerly called Antegren, Tysabri was first FDA- approved in 2004 to help reduce the frequency of attacks in people with relapsing forms of MS. It was taken off the market in early 2005 after two patients developed a rare, serious brain infection called. progressive multifocal leukoencephalopathy (PML). The FDA allowed the drug back on the market in 2006. Talk to your doctor about your individual risk for this infection. 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 PML.
- Fingolimod (Gilenya): Gilenya was approved by the U.S. Food and Drug Administration (FDA) 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.
- Demethylfumarate (Tecfidera): Approved June 2013, Tecfidera appears to have an effect of the metabolic pathway of the immune system to decrease some immune cells. It is given orally twice a day and has been associated with gastrointestinal symptoms, significant infections and hair loss.
- Alemtuzumab (Lemtrada): Approved December 2014, this monoclonal antibody directed at white blood cells is given in an intravenous infusion at infrequent intervals. Side effects include auto-immune disease precipitation, increased infections and significant infusion reactions.
- Daclizumab (Zynbryta): Approved May 2016, this is a monoclonal antibody directed to a portion of the white blood cell (CD 25). This injection is given monthly beneath the skin. Side effects include liver disease and increased risk of infection.
- Ocrelizumab (Ocrevus): Approved in March 2017, Ocrevus is a humanized monoclonal antibody that targets a specific type of white blood cell (the B-cell) that contributes to nerve damage in MS. It is approved for treatment of relapsing or primary progressive forms of MS and is usually reserved for severe cases.
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.
Some chemotherapies that suppress the immune system broadly and were designed to treat certain cancers may be used for progressive MS, but, except for Novantrone, they are not FDA-approved for treating MS and are rarely used.
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 chronic 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.
Botulinum toxin (Botox) also is approved by the FDA for treating specific MS symptoms, and a growing number of health care providers now use it 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.
In addition, research on the use of stem cells in slowing MS disease activity and repairing damage to the nervous system looks promising. Scientists are currently exploring the potential role in stem cells in treating MS.
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
- About one in 750 people in the United States has multiple sclerosis (MS).
- 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.
- 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.
Questions to Ask
Review the following Questions to Ask about multiple sclerosis (MS) so you're prepared to discuss this important health issue with your health care professional.
- Are there any tests I need to help determine whether or not I have MS?
- Which pattern of MS do I seem to have?
- Which symptoms might I experience with this pattern of MS?
- What medications are available to slow the progress of the disease? How effective are they, and do they cause any side effects?
- What medications are available to me to help control the symptoms of MS?
- What kinds of side effects should I expect?
- Are there any lifestyle changes I could make to live better with the disease?
- How much help from other people will I need?
- What are the resources for people with MS?
- Can I have children? Are there risks to the baby or me?
- How likely is it that my children will develop MS?
- 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. According to the National Multiple Sclerosis Society, most people with RRMS eventually develop secondary progressive MS, in which there is a worsening of symptoms with or without occasional flare-ups and minor remissions.
- 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.
- Managing memory problems
Make sure your family or close friends understand the real issue behind your memory problems. Consider a professional evaluation by a neuropsychologist who can explore support options with you. Use organization strategies: Write down appointments, phone numbers and other info in a portable planner, either paper or electronic. Make sure everyone knows that commonly used items have to be returned to where they are usually kept. Send yourself phone, text or e-mail messages as reminders to do things. Organize your bills and write down when they're due the day they arrive in the mail or set up a system to pay them electronically.
- Gift shopping: Make it a pleasure, not a pain
Organize your shopping year-round so you won't have to do as much during the holiday season. Ask for sizes, favorite colors, preferences and interests and keep a list. Take advantage of the Internet for online shopping, with a partner if you need help with the keyboard. Call ahead to know which stores are likely to have what you need; also ask about potential access problems. If necessary, bring along a helper for reaching things on higher shelves, or hire a student, or ask for a volunteer from a youth organization. Get "family" gifts rather than individual gifts for the holidays.
- Dress for success
When buttons are hard to handle, use Velcro instead. If the button is sewn on the outside of the garment so it appears where it normally does when buttoned, it won't be easy to tell the difference. Velcro on shoes, or elastic shoelaces, or slip-on shoes, can also make life easier. Assistive devices such as buttonhooks and zipper pulls may be helpful. Cut out the crotch from panty hose (within the seams) and put on panties over the hose, to make bathroom trips easier—you won't have to pull the hose up and down repeatedly during the day.
- Safety, convenience in the bathroom
Get rid of throw rugs if they make it easier for you to slip and fall. Put a nonslip rubber mat, tape or decals in the shower and anywhere else they're helpful for making the floor less slippery. Have grab bars installed in the shower, tub and near the toilet—don't expect towel racks or other wall items to support your weight. To avoid dropping soap and having to retrieve it, use soap-on-a-rope, liquid soap or assistive soap devices—or take an old nylon knee-high and put soap in it, then knot the end.
- Kitchen strategies
Take cabinet doors off from below the sink so you can sit and rest your feet on the cabinet base while working. Cover exposed pipes with insulation to prevent burns. Install long lever taps to turn water faucets on and off. Have at least one low countertop put in for wheelchair use, or so you can sit to work, or buy a kitchen cart with a working surface. Mix ingredients in the sink to avoid spilling on the counter. Or use the dishwasher door as a mixing surface—then just run the dishwasher to clean it.
Organizations and Support
For information and support on coping with Multiple Sclerosis, please see the recommended organizations, books and Spanish-language resources listed below.
American Academy of Neurology
Address: 1080 Montreal Avenue
St. Paul, MN 55116
American Autoimmune Related Diseases Association (AARDA)
Address: 22100 Gratiot Avenue
East Detroit, MI 48021
American Occupational Therapy Association
Address: 4720 Montgomery Lane
P.O. Box 31220
Bethesda, MD 20824
Can Do Multiple Sclerosis
Address: 27 Main Street Suite 303
Edwards, CO 81632
Dignity 2 Study
National Institute of Neurological Disorders and Stroke
Address: NIH Neurological Institute
P.O. Box 5801
Bethesda, MD 20824
National Multiple Sclerosis Society
Address: 733 Third Ave., 3rd Floor
New York, NY 10017
Alternative Medicine and Multiple Sclerosis
by Allen C. Bowling, Md. Ph.D.
Autoimmune Connection: Essential Information for Women on Diagnosis, Treatment, and Getting On with Your Life
by Rita Baron-Faust and Jill Buyon
The Multiple Sclerosis Diet Book: A Low-Fat Diet for the Treatment of M.S.
by Roy L. Swank and Mary-Helen Pullen
Women Living With Multiple Sclerosis: Conversations on Living, Laughing and Coping
by Judith Lynn Nichols
Medline Plus: Multiple Sclerosis
Address: Customer Service
8600 Rockville Pike
Bethesda, MD 20894
National Multiple Sclerosis Society