Multiple sclerosis (MS) is an unpredictable disease. Symptoms can vary in duration and intensity and appear in different combinations in different people. These variables make it difficult to predict how MS will progress over time for a given person. However, these facts are known:

80 percent of patients with MS experience partial or full remission of symptoms, particularly during the early stages of the disease.

MS does not significantly alter life span.

About 90 percent of those with untreated relapsing-remitting MS will convert to the progressive type at some point.

Any form of MS can stabilize at any time. Almost a third of those with progressive MS may clinically stabilize for up to several years.

Taking a disease-modifying drug may help slow the progression of some forms of the disease.

Flare-ups of the disease are often preceded by viral infection and occur more frequently in the three months after women have given birth.

While it is impossible to determine the exact path an individual's disease will take, it may be possible to predict something general about its long-term direction. There are several variables that affect the long-term progression of MS:

The long-term course of MS depends largely upon which type of the disease a person has. The relapsing-remitting form and the various progressive forms each follow different patterns.

The status of MS by the five-year point often indicates how the disease is likely to continue.

Younger age at onset is thought to generally favor a better disease course. Older age at onset (over 35-40), especially for men, often points to a more progressive path.

Slower progression is generally associated with:

Fewer flare-ups or exacerbations in the years just after diagnosis

Long intervals between flare-ups

Full recovery following flare-ups

Sensory symptoms, such as numbness or tingling, with flare-ups

More progressive disease has been associated with:

Frequent flare-ups

Incomplete recovery from flare-ups

Early symptoms such as tremor, lack of coordination or difficulty walking

New research links the rapid progression of MS to a gene known as apolipoprotein E-4 (APOE-4). Variations of this gene have previously been linked to Alzheimer's disease and heart disease. Patients who have the APOE-4 gene develop MS earlier and progress faster toward disability. In the future, detecting the presence of this gene may help doctors treat and counsel patients more accurately.

Most people with MS are concerned about the way the disease will affect their family life, career and social life. Symptoms play the biggest role--how we are feeling determines what we can do. However, patients with MS must also make lifestyle decisions that will accommodate their disease.

A diagnosis of MS often opens important discussions at home. Couples may have to renegotiate their roles to accommodate MS. Household duties and childcare routines may require a shift in workload or an adjustment in expectations. Couples may also discuss living on one income instead of two, to ease stress for the partner with MS.

Couples who do not yet have children will want to seriously consider how they will handle the demands of a family while coping with MS. While MS has no adverse effect on pregnancy and childbearing, it is important to think in terms of the 18-plus years that full-time parenting requires. As long as couples understand and can make the necessary adjustments, MS need not deter them from having children.

It is a good idea to examine one's occupation in light of having MS. If physical limitations or cognitive changes were to occur, could the present occupation accommodate those changes? If the answer is no, it may be necessary to consider different career options. Job retraining or further education may be needed. Career counselors can help with this.

Maintaining a network of friends is important. Having fun is important too. Both help keep life in perspective. Patients with MS are limited socially only by their energy level and their symptoms. Planning ahead for fun times and staying rested will help preserve a good social life.

A healthy lifestyle is especially important for people with MS. Fatigue and other symptoms are affected by several factors over which we have some control. Here are seven healthy strategies for anyone with MS:

Get enough sleep. A lack of sleep can worsen the symptoms of MS. Some people find that short naps or rest periods during the day are helpful.

Minimize stress. Stress occurs whenever we adjust to change, whether it is positive or negative. Stress may make MS worse, so commitments should be arranged to keep stress at a minimum. Stress reduction techniques like massage or listening to soothing music are important keys to living successfully with MS.

Maintain good nutrition. Good nutrition boosts energy and has a positive effect on overall health. Avoid junk foods and skipping meals, and eat plenty of fruits, vegetables, and whole grains.

Exercise regularly. Regular exercise actually increases physical energy. Patients should take care not to get too hot during exercise, however.

Develop a good support system. All of us need people who are willing to provide emotional support and tangible help when we need it. For some people, involvement in a faith-based group helps meet this need. Studies show that people with chronic illnesses cope better when they are involved with others who share their spiritual convictions.

Set goals. Goals add structure to life. Patients cope more successfully when they are working toward specific goals

Think positive. Numerous studies show that a positive outlook on life can have a positive effect on physical health.

References

First published October 1, 1999
Last updated May 2, 2003
Copyright © 1999 Accordant Health Services, Inc. All Rights Reserved.

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