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After one or two attacks with complete recovery and without any disabilty, this form or stage of MS does not worsen with time and there is no permanent disability or disease progression.
Benign Multiple Sclerosis tends to follow, non-visible SensorySymptoms (ie. Dysesthesia, Optic Neuritis, Paresthesias, Paroxysmal) at onset; not Motor Symptoms (ie. Diplopia, InCoordination, Tremor, with a totally complete recovery and no disability.
However, some in this category will eventually experience disease progression; their course of disease will change and evolve into the Progressive stages of MS, within 10 - 15 years of its official onset.
Benign MS can only be positively identified, after there is minimal disability (EDSS < 3.0), 10 to 15 years following its official onset. Initially, it would have been categorized as R/R MS.
Relapsing/Remitting MS - approx 25%
In this form or stage of MS there are sporadic attacks (exacerbations, relapses), during which new symptoms appear and/or existing ones become more severe. They can last for varying periods (days or months) and there is partial or total recovery and remission.
MS may be clinically inactive (SubClinical), for months or years, between any number of intermittent attacks. However, the disease process is ongoing and damage continues, with or without clinical attacks; microscopic lesions and diffuse damage (Axonal loss) silently proceed.
This is the most common beginning phase of MS. However, 50% of cases will have progression within 10 - 15 years, and an additional 40% within 25 years of onset; as the disease evolves, into the Secondary/Progressive phase.
Secondary/Progressive MS - approx 40%
Individuals who initially had Relapsing MS (clear-cut attacks & remissions), over time (10 - 15 yrs) the disease pattern changes, evolving into the Progressive stage.
Recovery from attacks become less and less complete, slowly deficits increase and disability grows. Clinical attacks become less pronounced and remissions tend to disappear, but more CNS tissue has now been destroyed.
This cumulative damage is seen on MRI, as enlarged Ventricles, which is a definitive progression marker for increased Atrophy of the Corpus Callosum, MidLine Centers, and Spinal Cord.
S/P MS has two sub-categories
1.Those continuing to experience exacerbations, retain a R/R MS disease pattern (Inflammatory attacks).
2.Those who no longer have clinical attacks and remissions, become closer to a P/P MS disease course (Non-Inflammatory Axonal Damage.
Primary/Progressive MS - approx 12%
This form of MS is characterized by a slow steady onset, usually beginning with walking difficulties; steadily worsening motor dysfunctions and increased disability, but with a total lack of distinct inflammatory attacks.
Fewer and smaller Cerebral lesions, diffuse Spinal Cord damage and Axonal loss are the hallmarks of this form of MS. There is continuous progression of deficits and disabilities, which may quickly level off, or continue over many months and years.
Progressive/Relapsing MS - approx 3%
This subtype of Progressive MS is more complex; although its overall course mirrors P/P MS in terms of Disability, it differs. It includes periods of acute exacerbations that look like Relapsing MS (having Gd-enhancing T1 lesions), either early on or after many years have elapsed, but lost functions never return.
Progressive/Relapsing is the most dreaded MS form, it was known as Marburg MS and demonstrates the need for protracted Steroid therapy, with a high mortality rate.
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
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.
Denial
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".
Grieving
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.
Depression
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.
Guilt
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
