Presymptomatic

The presymptomatic phase precedes awareness of neurological deficits, although subclinical inflammatory activity may be present in the CNS. Psychosocially, this period serves as a reference point for the events that follow. It retrospectively represents not only what the patient had already accomplished in life but also his or her plans and hopes for the future that were present before even the idea of chronic illness entered the patient’s consciousness. When meeting a patient who has lived with MS for any period of time, it is useful to learn about the presymptomatic period to assess his or her premorbid level of functioning, skills, interests, and hopes for the future.

Symptomatic

The symptomatic phase is the period between the onset of symptoms and confirmation of the diagnosis. Prior to the availability of the MRI, this period could last years. In some cases, the medical record would indicate the diagnosis of MS but patient and family were not informed, as there were no treatments approved for use in MS. This phase has a number of common scenarios. First, there are still many patients who live with symptoms for some time, with no definitive medical explanation. Sometimes, these patients are referred to mental health professionals because their symptoms do not appear to be explained through medical tests. These patients may be relieved when they receive the diagnosis, as they learn “it was not all in my head.” The next group of patients also responds with relief, because a tumor had been suspected. A third group of patients began experiencing neurological symptoms, received a diagnosis of MS within days, and went from thinking of themselves as completely healthy to learning that they had a serious, potentially disabling chronic illness without much time to process this major life change. One example is the patient with a slight visual disturbance who consults an ophthalmologist, who orders and MRI and offers the diagnosis of MS on the same day as the consult. These patients are particularly unprepared upon learning of their diagnosis.

Education

Educated patients have better overall medical outcomes and improved adherence to medication. The patient’s partner and family members should be included in patient education efforts. Family members are likely experiencing similar anxiety and struggle to understand the illness. In particular, it is important to distinguish the objectives and desired outcome of disease-modifying treatment (DMT) from the goals of symptomatic treatment. It is often difficult for the patient and family to grasp that the objective of DMTs is no change, that is, no new lesions or clinical attacks, rather than reversal of accrued disability or symptomatic relief.

Instillation of hope

At this moment in time, patients frequently feel that their life has come to an end. They fear that their goals and aspirations will no longer be attainable and may feel terror at the image of themselves as a severely disabled person in a wheelchair. They are eager to know how MS will affect their lives in both the short term and also the long term. Given the heterogeneous nature of the illness, however, the neurologist will be unable to make an accurate prediction of the patient’s prognosis. Neurologists should ask patients what they fear most and then try to address fears and to correct myths and assumptions about MS head-on with realistic, accurate information and perspective. For example, if the patient’s greatest fear is the eventual need to use a wheelchair, the neurologist could cite a recent study that stated that only 20% of patients with a wide age range and duration of illness used a power wheelchair, scooter, or walker (Iezzoni et al. 2010). Additionally, it may be of comfort for some newly diagnosed patients to know that patients diagnosed in today’s era of DMTs are more likely to have improved outcomes over most existing studies that included patients who had not had the benefit of DMTs early in the disease course. It is advisable to present an optimistic assessment at this point, as the patient has had little time to address her or his anxieties. While there may be a risk in being too optimistic, leading to disappointment down the road, being too pessimistic will potentially increase anxiety and interfere with the patient’s successful resumption of premorbid activities and responsibilities (Boeije & Janssens 2004). Furthermore, higher levels of hope have been observed to be protective against patient distress.

It is also important to normalize the reaction of the patient and family. During the crisis of diagnosis, there is often a sense of separation and even alienation from others who are living life without facing such a high level of challenge. Patients and families often feel abnormal, which serves to further alienate them from their community. The neurologist can reassure the patient and family that it is normal to have an extreme reaction to the diagnosis and onset of a serious lifelong neurological illness. It is also helpful to assure the family that they will likely find their way through the crisis and that in time they will have greater confidence in their ability to live their lives much as they did before. Lastly, the neurologist should encourage the patient and her/his partner to avoid making major life decisions hastily at this time, such as whether to have children, until they have had more time to process the meaning of the diagnosis in their lives.

The initial shock of the diagnosis often gives way to sadness, anger, depression, and anxiety. Sadness and anger are common reactions to the loss of normal life and previous plans for the future. In addition, uncertainty about future disability can result in a great deal of anxiety. Depression and anxiety can and do occur early in MS. These conditions can be very disabling, and depression can be life threatening. Depression is found early in MS and in CIS. In patients experiencing a first demyelinating event or new diagnosis, 32% of patients experienced depression (Glanz et al. 2004). Family members can also experience depression and anxiety soon after diagnosis and may also experience guilt when they experience anger toward the person with MS (Rolland 1994; Holland et al. 2007).

The incidence of suicide among people with MS is considerably higher than the general population and in other chronic illnesses (Sadovnick et al. 1991). MS patients should be regularly screened for depression, anxiety, and suicidality, and treatment provided through a referral to a mental health professional or by the neurologist if mental health resources are not available.

MS patients have an increased rate of suicide as compared to the general population and matched populations. Sadovnick et al. (1991) found that suicide accounted for 15% of all deaths in an MS clinic population. Feinstein (2002) studied 140 serial patients in an MS clinic and found that 28.6% had experienced suicidal intent and that 9 of the 140 had actually attempted suicide. The presence and severity of depression, alcohol abuse, and social isolation had an 85% predictive accuracy for suicidal intent in the MS patients studied.

Neurologists should screen for acute (active in the present) thoughts about suicide and whether the patient has a plan that would result in self-harm. Suicidal ideation accompanied by a method or plan raises concern for the patient’s safety. When there is any concern whatsoever about a patient’s safety, she or he should be evaluated immediately by a mental health professional, always available at hospital emergency rooms. It is not advisable to release such a patient to family members, who may be unable to keep the patient safe. Regular screening for depression, alcohol abuse, and social isolation can reduce loss to suicide.

It should also be noted that depression, anxiety, and anger at self and others may actually be components of eventual adaptation. This can be reassuring and can be communicated to families concerned about these understandable reactions.

It is during the crisis phase that the experience of grief begins. The losses experienced after the diagnosis of MS are quite different than the loss of a loved one, which occurs within a finite moment in time. The newly diagnosed MS patient experiences the initial loss of a sense of health and then faces additional losses as energy level and abilities become impaired, as compared to premorbid level of functioning, even if slightly or temporarily. One significant loss experienced by MS patients and their families is the loss of their sense of the future. Most individuals and couples nurture long-term plans. The diagnosis of MS initially seems to imply an interruption of future plans. This loss is complicated, as it is sometimes only when hopes for the future are threatened that the individuals and couples become aware of them.

Healthcare professionals can help by telling patients that their experience of loss is natural and expectable and that they need time to grieve these losses. It is also important to inform the patient and family members that as they will work through these losses, they will likely begin to feel better after a time.

The period of crisis following diagnosis also provokes existential questions in the patient and family. Most patients ask, “Why me?,” in an effort to put the illness into some context. This, of course, is an inherently unanswerable question, as MS has never been linked to any life choice, lifestyle, diet, or activity. Sometimes, this question is evidence of a patient’s sense of being punished and may be linked by the patient to a past choice or action that the patient deems unacceptable. It is a question that is likely beyond the scope of the neurologist to adequately attempt to address. If it can be determined that the patient has a relationship with a member of the clergy, it is advised that the patient be directed to discuss this question with that individual. Patients with a strong sense of faith and spirituality are often among the most successful at coping and adapting to medical illness (Brooks & Matson 1982). Alternatively, individuals may be referred to a mental health professional experienced with MS or other chronic illnesses.

Following the diagnosis, patients and families have the task of regaining control and coping with the initial emotional reaction to the diagnosis. Patients should be encouraged to continue with their usual activities and work, as they will soon learn that their capabilities have not been altered or are altered only slightly or intermittently. They should be informed that virtually all patients make it through this period and go back to living their lives, engaging in usual activities, and achieving their goals—and in doing so, the sense that they can live their lives in spite of the MS is regained. Patients and family members often feel that they need to rethink important future goals immediately, with regard to such issues as family planning, geographic location, and home design.