Multiple Sclerosis

What Is It?

Multiple sclerosis (MS) is a chronic, sometimes disabling, disease of the central nervous system (the brain and the spinal cord). MS attacks and destroys myelin (a coating made up of fat and protein that protects the nerves) and the oligodendrocytes (the cells that produce myelin). The destruction of parts of the brain and spinal cord can affect a person's social life, work and mental health.

MS affects nearly 1 million people in the United States, according to the National Multiple Sclerosis Society, and impacts two to three times more women than men. It was thought that MS developed more often in white people than in Black people, but recent studies over the last decade show this may not be the case.

The cause of MS is still unknown, but many researchers think it results from an abnormal response by the body's immune system. Though the body usually sends in immune cells to fight off bacteria and viruses, in MS the immune cells attack the body's own healthy nervous system, thus the term autoimmune disease.

These misdirected immune cells (certain types of lymphocytes, T-cells, B-cells and natural killer cells) attack and consume myelin, so that messages are sent either very slowly or never reach their destination.

Eventually, there is a buildup of scar tissue (sclerosis) in multiple places where myelin has been lost. This is where the disease's name comes from: multiple sclerosis. 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.

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, there is a higher risk for MS in families where it has already occurred. Other possible triggers include exposure to toxins and heavy metals, as well as low levels of vitamin D. Smoking and obesity may worsen the condition.

Most commonly, MS starts with a vague symptom that disappears completely within a few days or weeks. Symptoms can appear suddenly and then vanish for years after the first episode, or in some cases never reappear. The symptoms of MS vary greatly and can range from mild to severe. 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.

Specific symptoms associated with MS can include:

• Fatigue: Fatigue that is significant and 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 they do. Judgment and reasoning may also be affected.
• Visual disturbances: Blurring of vision, double vision, pain on eye movement and (rarely) total loss of sight.
• Balance and coordination problems: Loss of balance, tremor, unstable walking, dizziness (vertigo), clumsiness 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, a burning feeling in the face, arms, legs or other areas of the body.
• 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.

Though these are some of the symptoms commonly associated with MS, not all people with the disease will experience them all. 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 only 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.

Multiple sclerosis usually strikes in the form of attacks, also called exacerbations or flare-ups. 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.

Complications that are a result of the primary symptoms are often called secondary symptoms — urinary tract infections due to bladder dysfunction, for example. Another example of secondary symptoms include poor posture, muscle weakness, loss of muscle tone, decreased bone density (increasing risk of fracture) and shallow, inefficient breathing, all due to inactivity. While secondary symptoms can be treated, the goal is to prevent them by treating primary symptoms.

In addition, 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.

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 treatment can reduce how often and how severe your MS attacks are. In fact, research has led 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 show for certain that a person has MS. Instead, physicians use several strategies to make a diagnosis.

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 damages. An MRI is painless and noninvasive.

Bear in mind that a normal MRI does not ensure that a person does not have MS. About 5% of MS patients have normal MRIs, according to the National Multiple Sclerosis Society. However, it is important to note that when a person has a normal MRI, it becomes especially important 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. 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. A spinal tap helps rule out viral infections and other conditions that can cause symptoms similar to those of MS. It cannot confirm MS, but it can help support an MS diagnosis.

• Blood tests: These may help rule out other potential causes of symptoms, such as Lyme disease, lupus, vitamin deficiencies or other infections.

• Optical coherence tomography (OCT): A relatively new test, OCT is a painless, noninvasive procedure that looks at the structures at the back of the eye. 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.

If you are diagnosed with MS, it will most likely follow one of four patterns:

• Clinically isolated syndrome: This is when a person has their first episode of symptoms suggesting the onset of MS.

• Relapsing-remitting MS: This is the most common pattern of the disease at the time of diagnosis, initially affecting 85% of patients with MS. People with this pattern of MS experience clearly defined attacks, called exacerbations or relapses, followed by periods of partial or complete recovery, called remissions. During remission, all symptoms may disappear or some symptoms may continue while others stop. During remission, the disease stops progressing. 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 or it could be indefinite.

• Secondary progressive MS: Over half of those with relapsing-remitting MS will evolve into secondary progressive MS (SPMS), where neurologic function worsens over time. SPMS can be 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 means there is worsening of symptoms. When the disease is 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 periods with minor relief from symptoms but no long-lasting relief. About 15% of people with MS have primary progressive MS. This process may also be active or not active and progressive or not progressive (stable) over time.

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 only sensory 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 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 treatments to avoid during pregnancy and while breastfeeding. The disease-modifying drugs are not recommended during breastfeeding because it isn't known if they are carried in breast milk.

There is no cure for MS, but some strategies can change or slow the course of the disease, manage symptoms, treat flare-ups, improve function and address mental health issues. Comprehensive care is essential for treating MS and involves a team approach from a number of clinicians.

Disease-modifying medications can be used to help people manage their MS and reduce how often and how severe the relapses are. There are many disease-modifying drugs, which include injectable, oral and infused medicines.

Disease-modifying medications act to decrease the activity of the immune system, which is desired in an autoimmune disease in which the system is overactive. Different drugs target different areas within the immune system. None is used to treat specific symptoms. Medications may be used that are directed at a specific symptom — such as fatigue or urinary urgency — along with rehabilitative and lifestyle treatments.

It is important to weigh the risks versus the benefits when choosing an appropriate therapy. Relapses, progression of disability and MRI imaging help to determine effectiveness.

Talk to your health care provider if you experience side effects from your treatment. There may be strategies you can use to minimize the side effects; if they don't improve in a few months, you may be able to switch to a different treatment. 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.

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 people with progressive disease. However, its chronic use is controversial.

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 of stem cells in treating MS. This type of therapy is quite specific and does not involve simply injecting stem cells into the body, which is ineffective in MS.

Other ways to cope 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 your workplace and your home.

Physical therapy usually focuses on walking (including using 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.

Things you can do at home to manage fatigue or limited mobility include:

• Declutter your living areas.
• Share household tasks with family members.
• Simplify tasks like cooking so they are less stressful. For example, cook more frozen vegetables or freeze meals, so you can give yourself time off from meal preparation.
• Make tasks less tiring. For example, put a table and chair in the kitchen so you can sit while cutting or stirring.
• Identify your priorities. Find shortcuts with tasks that are important to you and eliminate the tasks that are not essential.
• Cut back on tiring activities, or make changes to your activities that will save energy (such as planting a smaller garden).
• Minimize or combine errands if it's easier to make one trip instead of multiple 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. 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 can be manageable. If detected early, medications may slow the progress of the disease and the severity of symptoms.

There is now 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.

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 resources are there 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 how it will affect you. 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.

1. Managing memory problems
   Make sure your family and 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 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.
2. 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.
3. 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, 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 or stockings (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.
4. Safety, convenience in the bathroom
   Get rid of throw rugs if they cause you to slip and fall. Put a non-slip 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 or liquid soap — or take an old nylon knee-high and put soap in it, then knot the end.
5. 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 if you are using a wheelchair, 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.

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
Website: https://aan.com/
Address: 1080 Montreal Avenue
St. Paul, MN 55116
Hotline: 1-800-879-1960
Phone: 651-695-2717
Email: memberservices@aan.com

American Autoimmune Related Diseases Association (AARDA)
Website: https://www.aarda.org
Address: 22100 Gratiot Avenue
East Detroit, MI 48021
Hotline: 1-800-598-4668
Phone: 586-776-3900
Email: aarda@aarda.org

American Occupational Therapy Association
Website: https://www.aota.org
Address: 4720 Montgomery Lane
P.O. Box 31220
Bethesda, MD 20824
Hotline: 1-800-377-8555
Phone: 301-652-2682

Can Do Multiple Sclerosis
Website: https://www.mscando.org
Address: 27 Main Street Suite 303
Edwards, CO 81632
Hotline: 1-800-367-3101
Phone: 970-926-1290
Email: info@mscando.org

National Institute of Neurological Disorders and Stroke
Website: https://www.ninds.nih.gov
Address: NIH Neurological Institute
P.O. Box 5801
Bethesda, MD 20824
Hotline: 1-800-352-9424
Phone: 301-496-5751

National Multiple Sclerosis Society
Website: https://www.nmss.org
Address: 733 Third Ave., 3rd Floor
New York, NY 10017
Hotline: 1-800-344-4867
Email: info@nmss.org

Books

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

Managing the Symptoms of Multiple Sclerosis
by Randall T. Schapiro, M.D., FAAN

Women Living With Multiple Sclerosis: Conversations on Living, Laughing and Coping
by Judith Lynn Nichols

Spanish-language resources

Medline Plus: Multiple Sclerosis
Website: https://www.nlm.nih.gov/medlineplus/spanish/multiplesclerosis.html
Address: Customer Service
8600 Rockville Pike
Bethesda, MD 20894
Email: custserv@nlm.nih.gov

National Multiple Sclerosis Society
Website: https://www.nationalmssociety.org/informacion-en-espanol/index.aspx
Hotline: 1-800-344-4867