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Living with MS
by Debra Frankel, MS, OTR with Hettie Jones

Illustrations by MS Through the Eyes of a Child? artists.

CLEARING UP MISCONCEPTIONS

MS isn't well understood yet, so there is plenty of misinformation about it. Here are some things you may have heard already.

  • "MS is fatal."

It isn't. Statistics show that most people with MS have a near normal life span. Most deaths associated with MS are due to complications in advanced, progressive stages of the disease.

Rain storm giving way to rainbow and sun illustration
by Shanna Goldenberg

Effective early treatment of MS should help to prevent those complications. In very rare cases, MS is malignantly progressive and may be fatal.

  • "Everyone with MS will be in a wheelchair sooner or later."

Not true. Many people with MS remain able to walk without help. However, the likelihood of needing a mobility device increases the longer someone has MS. In addition, people who are still able to walk may use a wheelchair, cane, scooter, or other device to conserve energy or prevent injury from falls. Only 25% of people with MS use a wheelchair or stay in bed because they are unable to walk, according to a well-designed survey completed before the new disease-modifying drugs became available.

  • "Life in a wheelchair is a half-life."

People who use wheelchairs also work, drive cars, travel, do sports, carry on family and social life, contribute to the community, and pursue their dreams.

  • "You should stop working. The stress is harmful."

There is no scientific evidence that the normal stress of working has any effect on MS. But symptoms, such as fatigue, can cause problems on the job. Approximately 30% of people with MS are working full-time after 20 years. The National MS Society thinks that number could be higher, and works to change the attitudes of employers and employees alike.

  • "You shouldn't have children."

Most women with MS find their symptoms lessen during pregnancy. Then, the risk of an attack rises somewhat in the first six months after delivery. Overall, pregnancy and childbirth have no long-term effect on MS. Those who fear passing on the disease to their children should know that the risk is actually very small: somewhere between 1% and 5%. But you should consider what options you might have for help caring for your children in the event that MS interferes with your ability to do so.

  • "Diet can cure MS."

No dietary claim has yet held up in scientific studies. However, for general good health, people with MS are strongly advised to follow the low-fat, high-fiber, varied diet recommended by the American Heart Association and the American Cancer Society.

  • "MS is the same as muscular dystrophy."

Muscular dystrophy (or MD) is a disease of the skeletal or voluntary muscles which control movement. MS is multiple sclerosis.

 

1.

What is multiple sclerosis?

MS is thought to be an autoimmune disease that primarily affects the central nervous system (CNS). The CNS consists of the brain, spinal cord, and the optic nerves. Surrounding and protecting the nerve fibers of the CNS is a fatty tissue called myelin, which helps nerve fibers conduct electrical impulses.

In MS, myelin is lost in multiple areas, leaving scar tissue called sclerosis . These damaged areas are also known as plaques or lesions . The nerve fiber itself can also be damaged or broken.

Myelin not only protects nerve fibers, it makes their job possible. When myelin and/or the nerve fiber are destroyed or damaged, the ability of the nerves to conduct electrical impulses to and from the brain is disrupted, and this produces the various symptoms of MS.

MS is not contagious. No one in your family will catch it from you.

Father and daughter illustration
by Victoria Brooke

2.

What causes this disease?

While the exact cause of MS is unknown, most researchers believe that the damage to myelin results from an abnormal response by the body's immune system. Normally, the immune system defends the body against foreign invaders such as viruses or bacteria. In autoimmune diseases, the body attacks its own tissue. It is believed that MS is an autoimmune disease. In the case of MS, myelin is attacked.

Scientists do not yet know what triggers the immune system to do this. Most agree that several factors are involved.
   
3.

What are the symptoms of MS?

Symptoms depend on which areas of the CNS have been attacked.

Symptoms are not only different for different people, but different in the same person from time to time.

Symptoms may range from mild to severe. They may go away on their own or they may not. A person with MS will usually experience more than one symptom, but not all of them.

MS symtoms as a heavy anchor illustration
by Nicole Leitner

Symptoms include weakness, tingling, numbness or impaired sensation, poor coordination, fatigue, problems with balance, visual disturbances such as blurred vision or involuntary rapid eye movement (also called nystagmus), tremors, spasticity or muscle stiffness, weakness, slurred speech, bowel or bladder problems, unstable walking (ataxia), problems with sexual function, sensitivity to heat, mood swings, increased susceptibility to clinical depression, and problems with memory, judgment, or reasoning (cognitive problems). In severe cases, MS can cause partial or complete paralysis.

Remember, the majority of people with MS do not have all these symptoms.
 
4.

How is MS diagnosed?

Because no single test can diagnose MS, several tests and procedures are needed. These are likely to include:

  • A medical history, in which the physician will look for evidence of past signs and symptoms.


  • A thorough neurological exam.


  • MRI (magnetic resonance imaging), a non-invasive form of imaging that produces detailed pictures of the brain.


  • Studies called "visual evoked potentials" that measure the response of the CNS to specific kinds of visual stimulation.

Other tests, less commonly used but helpful where diagnosis is unusually difficult, are:

  • Lumbar puncture or spinal tap, to look at the composition of the fluid that surrounds the spinal cord (cerebrospinal fluid or CSF).
Assessment of cognitive (intellectual) function, which should be done by a qualified neuropsychologist, a specialist in the behavioral changes caused by brain disease or trauma.
 
5.

Are second opinions-to confirm diagnosis-a good idea?

If you've seen only one doctor, it's certainly reasonable to get a second opinion. Your original doctor should not be insulted or hurt because you want to confirm your diagnosis. You might ask your family doctor, or call the National MS Society for a referral to an MS specialist in your area.
 
6.

What will happen next with my MS?

No one really knows. You and your doctor should talk over your particular situation. The words you will hear most often are "unpredictable" and "variable". Living with this unpredictability is part of living with MS.

Many people go through periods of exacerbation. These are acute attacks, also called relapses, when new symptoms appear or existing symptoms become more severe. Exacerbations are usually followed by remissions, which may bring you back to your pre-relapse level or may leave you with some remaining disability. This form of MS is called relapsing-remitting MS.

Some people have few or no severe attacks but instead experience slow but steady worsening of symptoms and disability over time. This pattern may exist from the outset. This is called primary-progressive MS. Or, this steady pattern can follow an earlier period of relapsing-remitting MS. This is called secondary-progressive MS.

MS may stabilize at any time, regardless of pattern. If your physician has experience caring for other people with MS, he or she may have additional insights about your situation.

   
7.

Is MS inherited?

MS is not directly inherited, although studies do reveal a family predisposition. This means that siblings or other close relatives are somewhat more likely to develop the disease. However, 80% of people with MS do not have a close relative with MS.

Mother and daughter illustration
by Nicole Hebert
   
8.

Who gets MS?

Women develop MS at a rate almost double that of men. It's estimated that in the United States some 400,000 people are living with MS. Because it isn't contagious, the reporting of cases is not required. So the actual number of people with MS can only be guessed at.

Worldwide, MS occurs more frequently in temperate than tropical climates, and is more common among people of Northern European ancestry. African-Americans, Hispanic-Americans, Asian-Americans, and Native Americans all get MS, but at lower rates than people of Northern European ancestry.

 
9.

Are there any treatments for MS?

Yes, there are many treatments. They fall into two general groups. The first group addresses the disease itself. These are FDA-approved drugs to control MS. The second group includes drugs and techniques to alleviate symptoms. Symptom management is vitally important for living well with MS. We've provided a brief introduction under question 11. There are many more.

Because treatment for MS is changing so rapidly, it's a good idea to be in contact with your doctor for up-to-date advice. The National MS Society is also a source of information on new developments. Call 1-800-FIGHT-MS or check our Web site often.
 
10.

What therapies fight the disease?

Five drugs have been approved for control of MS. These drugs are Betaseron, Avonex, Rebif, Copaxone, and Novantrone. None of them cure MS. They reduce the frequency and severity of attacks. They delay the onset of permanent disabilities. And they reduce signs of injury within the brain as seen on MRI scans. They are sometimes referred to as the disease-modifying drugs.

Medicine bottle illustration
by Nicole Leitner

Betaseron, Rebif, and Avonex are forms of interferon beta, a substance the immune system normally makes to regulate itself. These three drugs are approved for treatment of relapsing forms of MS. Avonex is also approved for earliest signs of demyelinating disease, prior to a diagnosis of MS.

Copaxone is a synthetic that mimics a component of human myelin and may work by serving as a decoy for the MS attack. This drug is approved for relapsing-remitting MS.

In the opinion of the Society's Medical Advisory Board, the four disease-modifying drugs detailed above are generally comparable. The board recommends considering one of these drugs for everyone with a definite diagnosis of MS with active disease, except women who are pregnant.

Novantrone is the first drug approved by the FDA to treat worsening forms of MS, including secondary-progressive and rapidly worsening relapsing-remitting MS. This is a powerful immune-suppressing medication with a limited lifetime dosage to prevent heart damage.

Other medications and combinations are in various stages of clinical trials or are under review by the FDA.
   
11.

What therapies relieve symptoms?

Corticosteroids, such as prednisone or methylprednisolone (Solu-Medrol), are used to shorten attacks (also called relapses, exacerbations, or flares). Other symptoms may occur day to day outside the context of an attack or relapse.

  • Stiffness in the muscles (spasticity) may be controlled with drugs including baclofen (Lioresal), tizanidine (Zanaflex), dantrolene (Dantrium), or diazepam (Valium).


  • Fatigue may be reduced with amantadine (Symmetrel), modafinil (Provigil), or possibly pemoline (Cylert) if the other two therapies fail. Spasticity and fatigue may also be managed with physical and occupational therapies.


  • Certain bladder problems respond to tolterodine tartrate (Detrol), oxybutynin (Ditropan), or propantheline bromide (Pro-Banthine). Sometimes techniques such as self-catheterization are recommended. Prompt treatment of urinary tract infections and adequate intake of fluids are important to help prevent bladder complications.


  • Bowel problems (such as constipation or diarrhea) are not uncommon. They are managed with diet changes, suppositories, or medications.


  • Burning, painful, or unusual sensations (called paresthesias) may respond to carbamazepine (Tegretol), amitriptyline (Elavil), or gabapentin (Neurontin) and other therapies.


  • Cognitive problems may be managed with rehabilitation and training.
Something can be done to moderate almost every MS symptom, but getting the right remedy often takes a period of trial and error. Good communication with your nurse and doctor is the key. And there is more to managing MS than taking medication.
   
12.

What can rehabilitation offer?

Rehabilitation cannot alter the course of MS itself, but may improve fitness, independence, functioning, and cognition.

Physical therapy (PT) can help strengthen weakened or uncoordinated muscles and improve balance. PT might include range-of-motion exercises, stretching, strengthening, help with walking, and lessons on the best ways to be fitted for and to use canes, walkers, or other assistive devices. PT can also include exercises to increase overall function and stamina, transfer training (for example, learning how to move safely from wheelchairs to cars), and advice on a regular exercise program.

Man with cane illustration
by Hayley Teater

Occupational therapy is geared toward improving independence in daily living. An occupational therapist (OT) is a specialist in energy conservation to combat fatigue. OTs teach techniques for dressing, grooming, eating, and driving, and exercises for coordination and strength. An OT can recommend equipment and ways to adapt the home or workplace.

Speech therapy solves problems for those who may have difficulty speaking or swallowing due to weakness or poor coordination. Techniques used by speech therapists (also called speech pathologists) might include exercise positioning, voice training, diet modification, or the use of special communications devices.

Cognitive rehabilitation offers exercises and strategies to improve memory, attention, information processing, and reasoning-which may become slowed due to loss of myelin in the brain. In addition to exercise, a neuropsychologist, speech pathologist, or OT might teach ways to compensate for problems, including time management, organization methods, and the use of computers.
   
13.

Does exercise help?

Yes. Exercise alone cannot alter MS, but it can improve overall health and may prevent many complications that stem from inactivity. Because exercise helps to regulate appetite, bowel and bladder function, and sleep patterns, and contributes to feelings of well-being, there are psychological as well as physical advantages to be gained from a regular exercise program.

Woman swimming illustration
by Grant Houlihan

You and your doctor or therapist can work out a combination of activities that will benefit you the most.

   
14.

What do employers need to know?

It's up to you whether or not to disclose your diagnosis to co-workers and your employer. Legally, you're not required to reveal this information.

Keep in mind that it's not a good idea to make major decisions about employment while you're in the midst of a crisis-either right after diagnosis, or during an attack of symptoms. Give yourself time to recover from immediate problems. Then gather information that will help you understand your options. MS varies from person to person, and so will its impact on work situations.

If you have been offered a job that requires a medical examination, you should be honest about your symptoms.

If you need any accommodations such as flextime, a modified telephone, or other equipment, you should discuss this with your employer. The Americans with Disabilities Act (ADA) requires most employers to provide "reasonable" accommodations.

The ADA contains many other provisions to protect you. Be informed before you do anything. Call your chapter of the National MS Society.
   
15.

Does MS affect sexuality ?

Everything connected to MS-from its physical symptoms to its emotional impact-can affect sexual expression. But this doesn't mean that sexual problems can't be managed successfully. People with MS can and do have fulfilling sex lives. Please consider these suggestions:

  • Work at sharing feelings honestly with your partner.


  • Be flexible about sexual expression.


  • Seek medical treatment for physical symptoms.
For non-physical problems, consider consulting a psychotherapist or counselor.
   
16.

Is depression common for someone with MS?

It's common to feel fear, confusion, loss of control, and grief at a diagnosis or worsening of MS. Beyond that, at one time or another, approximately half of people with MS experience what doctors define as moderate to severe "clinical" depression. Many others experience milder forms of depression. Depression can be a direct result of MS damage within the brain or a side effect of some medications. Depression, whatever the cause, is treatable with medications, counseling, and psychotherapy. Depression illustration
by Tanner Lowry

If someone is feeling hopeless, sad, or despairing, and/or is losing interest or pleasure in usual activities, and these feelings persist over several weeks, this may indicate clinical depression. Other symptoms include changes in appetite or weight, sleep problems, fatigue, feelings of worthlessness or guilt, inability to concentrate, restlessness, and recurrent thoughts of suicide, violence, or death. Anyone experiencing these symptoms should find a qualified professional who can help.

If you feel depressed or overwhelmed, remember that asking for help is not weakness but strength. Your chapter or your doctor can refer you to a knowledgeable professional.
   
17.

Can family counseling help?

The whole family lives with MS. It may change family routines for work, play-almost everything-and everyone is affected. Counseling may help the whole family to adjust.

Many National MS Society chapters offer family-oriented programs. Contact your chapter for information or for referral to counselors or support groups.
   
18.

What's the best way to tell children about MS?

Young children easily sense when something is wrong. They need clear, age-appropriate explanations. Discussing rather than hiding issues benefits children of any age. Usually they're more resilient and better able to accept painful realities than their parents assume. Children do need to be assured that their parent will not die and they need to know that they will be safe and cared for regardless of what MS may bring. Grandmother and granddaughter illustration
by Nicole Leitner

The National MS Society offers a number of brochures and special newsletters for children and teens of a parent with MS.

   
19.

Does stress make MS worse?

There's no solid scientific evidence that stress either causes MS or makes it worse. But stress makes people feel awful. Having any chronic illness is stressful in itself. People with MS can benefit from the following advice:

  • Keep as active as possible-mentally and physically.


  • Manage time to conserve energy.


  • Simplify life-set priorities.


  • Learn relaxation/meditation exercises.


  • Get help with hard-to-solve problems.


  • Make time for fun and maintain your sense of humor.


  • Set realistic goals and expectations.
Work on accepting what cannot be changed.
   
20.

Does smoking or drinking affect MS?

Recent studies have shown that smokers are more likely to develop MS than non-smokers, although no specific link has been determined.

Smoking harms your health in general which could add to disability. And because of weakness and poor coordination, a smoker with MS may be a fire risk.

Drinking causes poor coordination, poor balance, and slurred speech. It also impairs judgment and alters behavior. All this can add to existing symptoms, although there's no evidence that alcohol makes MS worse.
   
21.

How does heat affect MS?

Heat doesn't make MS worse permanently. But many people with MS find that hot, humid weather, a hot bath or shower, or a fever temporarily make their symptoms worse. It's a good idea to avoid the heat of day and to bathe in warm rather than hot water. Many people with MS find that cooling off with ice packs, iced drinks, cooling garments (such as vests, suits, hats, and neck, ankle, or leg wraps), and cool baths help to reduce symptoms. Sun illustration
by Meghan Metivier

An air conditioner may be an essential piece of equipment and is usually tax-deductible if your doctor recommends it.

   
22.

What about vaccination against the flu?

You should discuss your individual situation with your doctor. Based on recent research, it is the view of the National MS Society's Medical Advisory Board that the influenza vaccine can be considered safe for people with MS, including people who are taking disease-modifying therapies.

   
23.

Will alternative therapies help?

While alternative therapies have not had a proven effect on MS, people sometimes find alternative therapies help them reduce stress and feel better about themselves. But before deciding to pursue an alternative therapy, investigate its potential risks, benefits, and costs.

Alternative therapists are not MS specialists and cannot provide diagnoses. It is important to discuss new symptoms with your doctor and to keep your doctor informed about any alternative treatment or regimen you may decide to use.
   
24.

What's the bottom line?

MS is not your identity. You are still the same person you were but you have a lot to handle now. Here are some general tips on living well:

  • Take care of yourself. Eat well, exercise, and get enough rest. Listen to your body.
Angel illustration
by Nicole Leitner
  • Take control of your emotional well-being. Find people with whom you can talk and share feelings, and who will offer support.


  • Try to act as a partner with your physician and other health-care professionals to manage your disease.


  • Your MS is unique to you. Some people find it helpful to keep a diary, tracking what happens and when.
  • Examine your priorities. Try to make sense of MS within your own worldview, according to your personal values and insights. You might seek support from clergy, spiritual organizations, or counselors.
family
by Kelly Walsh
  • MS poses uncertainties about the future. At some point, you need to examine your financial plans, insurance coverage, housing needs, and other practical issues-and to build a network of informed advisors who can help with long-term life planning.


  • Call the National MS Society for information, referral, and support. Ask about available programs.

Other brochures of interest:

Debra Frankel, MS, OTR, is a senior analyst at Abt Associates. Hettie Jones is a professional writer.

Cover photograph: Rosanne and Ira Dawer and their three daughters, Jessica, Leah, and Janice. Photograph by Bill Stanton.

MS Through the Eyes of a Child? is a program designed by the National MS Society to recognize the art and inner thoughts of children with a loved one who has MS. Children ages 5 to 15 use visual art to express feelings about MS and family life. The illustrations in this booklet are from this program.

This publication is supported by contributions to the National MS Society from its members and friends.

Reviewed by members of the Client Education Committee of the National Multiple Sclerosis Society's Medical Advisory Board.

Copyright ? 2007 National Multiple Sclerosis Society

 
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