For 2 decades Maggie McPhersun's physicians had attributed her fatigue, episodes of choking, and periodic imbalance and numbness to chronic fatigue or depression. But the 51-year-old registered nurse and artist from Brunswick, Maine, knew that something was very wrong. When an MRI finally revealed multiple sclerosis (MS) lesions, the first thing McPhersun felt was relief. She finally had a sensible explanation for her symptoms. More than that, the MS diagnosis proved that she wasn't "crazy." As the gravity of the diagnosis sunk in, however, "it wasn't such a relief anymore," she remarked.1
"It's easier to face a scary known than a scary unknown," says Darcy Cox, PsyD, a neuropsychologist working with patients who have MS. Because the course and prognosis of MS is so uncertain, an MS diagnosis creates more anxiety than a diagnosis that carries a potentially worse prognosis but has a more finite and predictable outcome, according to Cox.
Syed Rizvi, MD, director of Rhode Island Hospital's Multiple Sclerosis Center in Providence, finds that although his patients experience considerable apprehension during both the workup and diagnosis of MS, most accept the diagnosis, and their anxiety about having the disease diminishes within about 6 months.
Research confirms Rizvi's clinical impression. A recent study using standard rating scales for anxiety and depression and disease-related distress shows that distress related to having MS decreased over the 2 years following diagnosis.2
Nonetheless, as MS researcher David Mohr, PhD, points out, the consequences of MS present patients with continuing emotional threats. According to Mohr, a neuropsychologist and professor at Northwestern University's Feinberg School of Medicine, patients are often terrified about becoming dependent and worried that they will be a burden to their families. Those in ongoing relationships fear that their partner will abandon them, and those without a partner fear that they won't find one. The distress that patients experience as they confront the uncertainty of their prognosis and the physical, social, and psychological burdens of MS are, for the most part, normal responses to extraordinary difficulties.
Cox believes that patients with these concerns do not usually require formal psychotherapy or anxiety medication, but they do welcome and benefit from an opportunity to discuss their concerns. For example, patients can draw substantial benefit from a 15-minute conversation in which the clinician listens attentively and sympathetically, acknowledges the difficulties facing the patient, and lets the patient know that his or her worries are normal and to be expected.
Mohr recommends that someone in the neurologist's office or in the clinic should be available to talk with patients about their concerns, refer them for counseling when needed, and help them get suitable legal protection. Many chapters of the Multiple Sclerosis Society and a number of health care facilities offer support groups. Whether a patient will find such a group helpful depends on the leadership of the group and the participants, said Mohr. For some, it is important that fellow participants be at roughly the same stage of illness. An asymptomatic patient with newly diagnosed disease has a different set of concerns than a group of wheelchair-bound patients who are coping with late-stage disease. The asymptomatic patient is likely to find exposure to a disabled group more disconcerting than helpful.
NEEDLE PHOBIA AND DMMs
The availability of disease-modifying medications (DMMs) is a big plus for patients but not if they are squeamish about self-administration. All DMMs are administered by injection. This fact adds to the anxieties with which affected patients wrangle. This is not a trivial problem, according to Mohr. He pointed out that about 7% to 22% of the general population have needle and injection phobias and far more persons—regardless of fearing needles per se—have difficulty injecting themselves.
Problems with self-injection appear to be particularly prevalent in patients with MS. Mohr found that half of patients for whom interferon ß 1a (IFN-ß-1a; Avonex), which requires weekly intramuscular injections, was prescribed were unable to inject themselves.3 Ellen Lathi, MD, director of the MS Center at Caritas St Elizabeth's Medical Center in Boston, confirmed the magnitude of this problem. She told Applied Neurology that 90% of her patients have trouble with self-injection. She added that fear of self-administration of DMMs is a major barrier to therapeutic adherence.
Lathi and her staff help patients get around their fears of DMM self-administration by providing injection training. When patients cannot inject themselves, family members and friends are enlisted and trained to administer the injections. As a last resort, Lathi has patients visit the clinic to receive injections.
Despite its restrictions and safety concerns, Lathi and Rizvi both remarked that they welcome the newly approved agent, natalizumab (Tysabri), which is administered once a month by intravenous infusion. According to them, it provides an alternative for the many patients who cannot self-administer—or do not have someone available to administer—DMMs. Still these and other specialists agree that self-administration of MS medication is preferable to other therapeutic interventions, in part because of convenience and patient independence.