In addition to its physical symptoms, MS may have profound emotional consequences. At first, it may be difficult to adjust to the diagnosis of a disorder that is unpredictable, has a fluctuating course, and carries a risk of progressing over time to some level of physical disability. Lack of knowledge about the disease adds to the anxieties commonly experienced by people who are newly diagnosed. In addition to these emotional reactions to the disease, demyelination and damage to nerve fibers in the brain can also result in emotional changes. Some of the medications used in MS — such as corticosteroids — can also have significant effects on the emotions. Some of the emotional changes observed in MS include the following:
Major depressive episodes as well as less severe depressive symptoms
Grieving for losses related to the disease
Stress and reactions to stressful situations
Generalized distress and anxiety
Emotional lability or mood swings
Pseudobulbar Affect - uncontrollable laughing and/or crying
Inappropriate behavior such as sexual aggressiveness
Persons with MS often experience losses — for example of the ability to work, to walk, or to engage in certain leisure activities. The process of mourning for these losses may resemble depression. However, grief is generally time-limited and resolves on its own. Moreover, a person experiencing grief may at times be able to enjoy some of life’s activities. Clinical depression is more persistent and unremitting, with continuous symptoms lasting at least two weeks. Grieving is generally related to changes in self-image triggered by the disease — e.g., no longer being able to think of oneself as an athlete. However, this process seems to be evolutionary and, with time and adaptive coping strategies, the individual can develop an altered self-image.
Grief generally resolves with time even without treatment. However, supportive counseling, support groups, as well as an understanding and supportive environment can help the process along.
“Depression” is a term that people apply to a wide variety of emotional states. These may range from feeling down for a few hours on a given day to severe clinical depression that may last for several months. People with MS and their family members and friends should be aware that depression in its various forms is one of the most common symptoms of MS, which can be caused by changes in the immune system and in the brain, as well as by the challenges and stresses of living with a chronic, progressive illness. In fact, studies have suggested that clinical depression, the severest form of depression, is more frequent among people with MS than it is in the general population or even in persons with many other chronic, disabling conditions.
Depression is not a sign of personal weakness. It is a significant, potentially life-threatening symptom that interferes with function and quality of life and makes other MS symptoms feel worse. As with any other symptom of MS, early assessment and treatment are essential.
The most effective treatment for depression is a combination of psychotherapy and antidepressant medication. Exercise has also been shown to enhance mood. Although support groups may be helpful for less severe depressive symptoms and generalized distress, they are no substitute for intensive clinical treatment.
If you have thoughts of harming yourself or feel you are at risk of hurting yourself or someone else, contact the National Crisis Hotline (1-800-273-TALK (8255) or text "ANSWER" to 839863). The hotline is available 24 hours a day.
Generalized anxiety and distress
MS is a generally disabling, progressive, and unpredictable disease that can cause significant anxiety, distress, anger, and frustration from the moment of its very first symptoms. The tremendous uncertainty associated with MS is one of its most distressing aspects. People with MS never know when and if another exacerbation will occur or how severely they may be affected in the future. They do not even know how they will feel from morning to afternoon or one day to the next. The loss of functions and altered life circumstances caused by the disease are also significant causes of anxiety and distress.
Professional counseling and support groups can be very helpful in dealing with the anxiety and distress that may accompany MS.
Emotional lability or “moodiness” may affect persons with MS and is manifest as rapid and generally unpredictable changes in emotions. Family members may complain about frequent bouts of anger or irritability. It is unclear if the emotional lability observed in MS stems from the distress related to the disease or if it is caused by some changes in the brain. Whatever the cause, emotional lability can be one of the most challenging aspects of MS from the standpoint of family life. Family counseling may be very important in dealing with emotional lability since mood swings are likely to affect everyone in the family. Severe mood swings respond well to low doses of the anticonvulsant medication valproic acid (Depakote®).
Approximately ten percent of people with MS experience uncontrollable episodes of laughing and/or crying — pseudobulbar affect (PBA) — that are unpredictable and seem to have little or no relationship to actual events or the person's emotions. A person may sob uncontrollably without feeling sad, or laugh inappropriately in a situation that isn't funny. These changes are thought to result from lesions — damaged areas — in emotional pathways in the brain. It is important for family members and caregivers to know this, and realize that people with MS may not always be able to control their emotions.
Several medications, including amitriptyline. levodopa, desipramine, fluoxetine, and fluvoxamine, have been used over the years to control PBA. In 2010, Nuedexta™ was approved by the US Food and Drug Administration (FDA) to treat pseudobulbar affect in MS and other neurologic disorders. This medication, which is taken by mouth once a day, is a combination of dextromethorphan and an enzyme inhibitor to sustain a therapeutic level of dextromethorphan in the body.
Life is full of stress and MS generally adds a hefty dose of disease-related stress to the mix. MS is unpredictable and just anticipating the next exacerbation can be a significant source of stress. MS can also lead to some major life changes such as loss of mobility and interference with work. Thus the person with MS faces significant challenges in coping with a potentially stressful life.
Stress has also been cited as a possible precipitant of the onset of MS or a trigger for exacerbations. Studies of the effects of stress on MS, however, have had conflicting results. It is important to not fall into the trap of trying to “avoid stress,” a nearly impossible task given the realities of life. Moreover, family and friends should not make the mistake of feeling guilty because they think they may have “created stress” in the person’s life. Stress is part of the reality of living and probably the best approach, rather than trying to avoid it, is to learn how best to manage and cope with it.
Stress-management programs are readily available and have become an accepted part of the treatment of many medical disorders. Professional counseling as well as support groups can also help in learning how better to cope with stress.
A very small proportion of people with MS exhibit inappropriate behavior such as sexual disinhibition. This type of behavior is thought to result in part from MS-related damage to the normal inhibitory functions of the brain. These behaviors may also reflect very poor judgment related to cognitive dysfunction caused by MS. Such behavior is generally beyond the control of the individual and is not a sign of moral weakness or sociopathic tendencies.
The treatment of these problems is complex. The person with MS may require some form of psychiatric medication, perhaps along with psychotherapy. Family members will probably need supportive counseling since these behaviors are often shocking and disruptive. In some cases, the affected individual may require supervision to prevent the manifestation of the behaviors in question.
The changes caused by MS can be negative or positive, sudden or gradual, permanent or temporary, predictable or unexpected. How to cope with MS-related changes comfortably and effectively is the subject of the workbook Living Well with MS: Coping with Change. Like other workbooks in the Living Well series, Coping with Change is designed to be used in a variety of ways: you can use it alone, as a guide for personal reflection and problem-solving, or as the basis of discussion with members of your family or your self-help group.