The National Multiple Sclerosis Society

Relapsing-remitting MS (RRMS)

Approximately 85% of people living with MS initially experience the relapsing-remitting form. To be designated as an RRMS relapse, the exacerbation must last for more that 24 hours, and two relapses must be spaced at least a month apart.
RRMS relapse rates range from 1.5-12 times per year. Research indicates that most untreated patients recover within six weeks of an acute relapse. Pregnant women generally experience a reduction in relapses but become more susceptible to attack in the three to five months following delivery.

Secondary progressive MS (SPMS)

This is the major progressive form of MS, and it initially appears as relapsing-remitting MS. The relapsing patient transitions into a progressive, slowly worsening stage marked by continued, worsening neurologic deficits. An observation period of six months or greater of this transition indicates a diagnosis of SPMS. In established SPMS, relapses typically diminish in frequency and then stop, but progressive neurologic decline continues. Up to 90% of relapsing patients become SPMS patients.

Primary progressive MS (PPMS)

This form is characterized by continual worsening from onset, without relapses. In late stages of disease, loss of function can become severely disabling.

Progressive Relapsing MS (PRMS)

In this form, there is worsening from the onset of the disease, with the subsequent appearance of relapses. Unlike RRMS, there is no correlating pattern of disability associated with the relapses and remissions.

Common Emotional Reactions to a Chronic Disease

Regardless of the kind of MS a person develops, emotional reactions are likely to be similar to the feelings reported by individuals with other chronic diseases. Disbelief, fear, anger, depression, and guilt are among them.

Many self-help books dealing with chronic illness place a strong emphasis upon regaining control of one’s life. In practice, this may translate into trying to ignore disabilities. The result can be destructive. For example, refusing to accept the need for walking aids, such as canes or crutches, can result in falls. A battle with MS must not become a fight against oneself.

It takes a form of faith for any person to get through an average day. We all do the best we can to avoid problems and adapt to adversity. But if a person’s sense of self-worth hinges on being able to control all changes that occur, the ability to adapt may be blunted. Sometimes the best way to improve a situation is to practice letting go of the need to control.

This work is part of a process, and not a single one-time challenge. Success probably lies in gradually redefining family, social, and work relationships, and learning to exchange some areas of responsibility for others.

Fear is a very common, very understandable initial reaction to chronic illness. The diagnosis implies a lifelong condition and long-term adjustments.

It is reasonable to fear pain, disability, and the unknowns of an illness. For many people, the greatest fear is losing control over their lives. Having control over one’s life is closely tied to self-image and self-respect, and this sense of loss of self-respect may be intense. These are not easy issues to work through.

Recent studies of people with chronic illnesses have concluded that denial can be a positive coping strategy as long as it doesn’t interfere with proper treatment and self-care.

Denial is a normal reaction, particularly at the time the initial diagnosis is made, or later, when MS has been quiet for a period of time. To the extent that denial allows people to set worries aside, it can be a positive "time out".

It is essential for people with MS to mourn their losses. Mourning can actually help the process of adjusting. The loss which occurs when a person can no longer function in some ways is as real as the loss of a body part.

Grieving needs to be accepted with patience and compassion by both the individual with MS and friends and family.

Grieving usually eases with time and is gradually replaced by sadness but also by accommodations to the loss. This adjustment is ongoing and does not follow any calendar or set of stages. Ultimately it is associated with some sense of relief.

The changes imposed by a chronic illness may periodically lead to bouts of depression. This is not uncommon. About half of all people with MS must deal with depression at some point during their lifetimes.

Many people without MS also struggle with depression at one time or another. Depression often goes unrecognized in our culture because there is a taboo against expressing negative feelings and an inclination to define mental problems as weaknesses.

If the person with MS has a history of depression or predisposition to it, she or he will be especially vulnerable. In some people, depression is actually caused by damage MS has done within the central nervous system. Or it can be a side effect of some MS medications. In addition, MS may impair a person’s ability to cope with depression that is not caused by MS.

Most people experience feelings of sadness or unhappiness—but these feelings usually lift. If a person has a depressed mood or loses interest and pleasure in activities that were once satisfying, and these feelings persist for several weeks, then the person may be experiencing major depression.

Other symptoms may include changes in appetite, sleep problems, fatigue or loss of energy, inability to concentrate or make decisions, uncommon restlessness or diminished activity, feelings of personal worthlessness or inappropriate guilt, or recurrent thoughts of death or suicide.

Serious or clinical depression is a disorder that can be treated. After the dimensions of the depression have been evaluated by a professional, antidepressant medication and/or psychotherapy are generally recommended—and are generally effective.

Despite the likelihood of a bout with depression, a recent study of a large group of people with MS showed that after the initial adjustment phase, most individuals were able to achieve a positive sense of self-worth that continued throughout their lives.

Feelings of "letting down" family and friends, not being able to accomplish usual tasks, or of somehow being responsible for developing this disease may envelop a person with MS. Young mothers with growing families, the most commonly diagnosed group, are particularly vulnerable to guilt.

Children easily amplify a parent’s guilt feelings. Their anger and frustration—which stems mainly from their fear of abandonment—increase parental distress.

Children or a spouse may not express fear or anger verbally but the anger and fear may be there. Both are normal; they reflect the importance of family attachments. But if they are kept secret, these feelings can become destructive.

Feelings of guilt or shame may also be heightened when friends or relatives are short-tempered or resentful. This is more likely to happen when invisible symptoms such as fatigue or pain are present. These reactions are normal; family and friends are also affected by the stresses of living with MS.

Everyone in the family will need a basic understanding of what the disease can do. It is important to define the real enemy as MS. No one is to blame for the problems MS has produced.

On the positive side, disability in a family sometimes encourages the development of compassion and helpfulness, especially in children. Many people say greater family cohesiveness results in the end.

The National Multiple Sclerosis Society