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2002 Selected Articles

Multiple Sclerosis
Part 2: Symptom Management

Nancy Holland, EdD; Barbara Giesser, MD

Managing multiple sclerosis (MS), a neurologic disease that predominantly strikes young women, requires a three-pronged approach. Part 1 of this series, which was published last month, described two aspects of care: acute treatment for easing flare-ups and maintenance treatment for slowing disease progression. Part 2 focuses on the third aspect of care: nonpharmacologic and pharmacologic interventions to control a broad range of MS symptoms.

MS symptoms vary greatly among women, and within each woman over time. A Canadian survey of 697 patients showed that the most common MS symptoms were fatigue (88%), mobility impairment (87%), elimination dysfunction (65%), pain and other sensory problems (60%), visual disturbances (58%), and cognitive problems (44%).¹ Recommendations for managing these symptoms are outlined in Table 1. Depression has been added to this list because it affects many patients with MS, and because it tends to be underdiagnosed.² It is usually amenable to therapy. Tremor is also common.

 

Table 1. Symptom Management in Multiple Sclerosis Symptom/Impairment Therapy Fatigue Amantadine, fluoxetine, methylphenidate*, modafinil*, pemoline; energy-conservation measures, cooling Mobility impairment       Spasticity Baclofen (including delivery by intrathecal pump), botulinum toxin, diazepam, tizanidine; stretching exercises, local cooling     Weakness/     incoordination Mobility aids, physical and occupational therapy Elimination dysfunction       Bladder storage     dysfunction Oxybutynin (including extended-release formulation), tolterodine, propantheline bromide, imipramine     Bladder emptying     dysfunction Intermittent catheterization; if symptoms are not relieved, one or more drugs listed in the section above may be added     Constipation Adequate fluid intake, high-fiber diet, stool softeners, evacuation 30 min after breakfast, suppositories, mini-enema     Fecal incontinence Elimination of dietary irritants, reduction of antispasticity medication, bulking agents, anticholinergics Sexual dysfunction Use of vibrator, water-soluble lubricants, sildenafil (Viagra); counseling Pain Anticonvulsants, antidepressants, nonsteroidal anti- inflammatory drugs, antispasticity agents Visual disturbances For optic neuritis: intravenous methylprednisolone, which may be followed by tapering dose of oral prednisone; for eye-movement disorders: baclofen, clonazepam, gabapentin, scopolamine Cognitive problems For impaired concentration: quiet environment; for memory deficiency: daily diary, simple written instructions, involvement of family for decision-making and problem-solving Depression Antidepressants; counseling Tremor Benzodiazepines*, gabapentin*, occupational therapy (weights, assistive devices)

*These agents are listed based on limited scientific data or on anecdotal observations.

FATIGUE

Occurring in the vast majority of patients with MS,³ fatigue can be frustrating and quite disabling: Barnes described it as "the dreaded fatigue."⁴ MS-related fatigue is defined as an overwhelming sense of tiredness, lack of energy, and exhaustion—far in excess of what might be expected from engaging in daily activities—and can be distinguished by patients from normal fatigue.⁵ This debilitating fatigue generally worsens toward the end of the day,⁶ and is exacerbated by warm temperature, poor sleep, pain, stress, insufficient exercise, and medication side effects.⁷ Like cognitive dysfunction and depression, fatigue may elude diagnosis, and may be misinterpreted as lack of initiative or laziness. These "invisible symptoms" may require careful inquiry to identify, but this effort is important because effective interventions are available. One woman with MS stated, "Something that seems to be my biggest stumbling stone [is] the fatigue. I get so depressed from it, and from my inability to finish anything I’ve started, much less start anything new."⁸

Fatigue can often be reduced by energy-conserving measures such as use of a motorized scooter. This is a difficult concept for ambulatory women to accept, but use of such energy-conserving measures can expand the scope of activities (eg, work, shopping, child care) that they can perform without experiencing overwhelming fatigue. Other nonpharmacologic measures that can be implemented to combat fatigue include participation in a regular exercise program and use of air-conditioning and cool drinks during warm weather. Certain medications, although not specifically indicated by the US Food and Drug Administration to alleviate fatigue, can be very helpful. These include amantadine, fluoxetine, methylphenidate, modafinil, and pemoline.

MOBILITY IMPAIRMENT

Impaired mobility is as common as fatigue in patients with MS. Patients complain of difficulty walking, but a careful neurologic examination is needed to identify the various components. Haselkorn and colleagues have identified primary and secondary impairments related to decreased mobility in MS (Table 2).⁹ Altered sensation may be a contributing factor. Spasticity may also be triggered or worsened by noxious or potentially painful afferent activity, including urinary tract infection (UTI) and distended bowel, as well as by skin irritation, decubitus ulcers, and other noxious stimuli.¹⁰

 

Table 2. Mobility Impairment in MS9 Primary Altered range of motion Weakness Deconditioning Impaired balance Ataxia Secondary Fatigue Depression Heat intolerance Pain Spasticity MS = multiple sclerosis.

A combination of interventions, including antispasticity agents (baclofen or tizanidine) and physical and occupational therapies, is often needed to maximize ambulation or wheelchair mobility. A regular exercise program will increase the strength of unaffected muscles and enhance endurance.

ELIMINATION PROBLEMS

Dysfunction of the bladder and/or bowel, a major cause of morbidity in MS patients, can compromise psychosocial functioning and limit vocational pursuits. In patients experiencing both problems, bladder dysfunction may need to be addressed first (to ensure sufficient fluid intake to manage bowel dysfunction).

Urinary Symptoms

The most common urologic complaints are urgency, frequency, and urge incontinence,¹¹ with hesitancy, nocturia, dysuria, and retention also encountered. All women, regardless of their neurologic status, are at risk for UTIs;¹² this phenomenon is attributed to the short length of the urethra and to its location near the anal area. Women with MS are at particular risk for UTI because of the high incidence of neurogenic bladder; up to 90% of them experience urinary dysfunction at some time during the disease course.¹³ Sirls and coworkers reported that 11% of patients with MS continue to experience recurrent UTIs despite appropriate medical management.¹⁴

Bladder problems fall into one of two categories: storage dysfunction, which is marked by detrusor hyperreflexia; and emptying dysfunction, which is marked by impaired detrusor contractility or detrusor–sphincter dyssynergia. Storage dysfunction is treated with medications that have anticholinergic or antimuscarinic action to relax the detrusor. Emptying dysfunction is first treated with intermittent catheterization; anticholinergic or antimuscarinic medication is then added if symptoms are not relieved. It is not possible to distinguish between storage and emptying dysfunction based upon symptoms alone.¹¹ Postvoid residual (PVR) volume must be checked, usually by straight catheterization or ultrasonography. A PVR volume of approximately 100 mL is considered the threshold: Below it, patients have storage dysfunction; and above it, they have emptying dysfunction.

Bowel Disorders

Constipation is the most common bowel problem in patients with MS: A recent survey of 280 patients showed that 43% had this complaint.¹⁵ This condition is treated in the usual manner, starting with adequate fluid intake, dietary bulk, and increased physical activity, followed by use of stool softeners, mild oral laxatives, suppositories, digital stimulation, and enemas.¹⁶ Fecal incontinence may also occur, but it is rarer than constipation.

NEUROLOGIC PROBLEMS

Pain

Many clinicians underestimate the role of pain in MS, which can cause considerable distress and disability. The most common types of MS-related pain are dysesthetic extremity pain, back pain, painful leg spasms, and paroxysmal pain syndromes.¹⁷ Almost 50% of patients with MS experience clinically significant pain during the course of their illness; women are more likely than men to be affected.¹⁸ Despite the high incidence and severity of MS-related pain, many clinicians fail to recognize and treat it because they tend to focus on physical problems.¹⁹ It is important to ask patients about such pain, as it is manageable with certain anticonvulsants (eg, carbamazepine, gabapentin) or tricyclic antidepressants (eg, amitriptyline).

Visual Disturbances

MS causes various types of visual impairment. Optic neuritis, one of the most common initial MS symptoms, also tends to occur as a relapsing symptom early in the disease course. Usual treatment consists of an intravenous infusion of methylprednisolone 1000 mg daily, for 3 to 7 days, followed by a tapering dose of oral prednisone over 2 to 4 weeks. Eye-movement disorders such as internuclear ophthalmoplegia and nystagmus may respond to treatment with baclofen, clonazepam, gabapentin, or scopolomine.²⁰

Cognitive Problems

Cognitive dysfunction affects 50% to 75% of patients with MS. Despite the high prevalence and profound impact on quality of life, this problem is often overlooked.²¹ Deficits may not be apparent in social conversation; instead, detailed, MS-specific neuropsychological testing is required to identify areas of impairment. If MS-related cognitive dysfunction is identified, clinicians will need to modify instructions and information imparted for decision-making to compensate for patients’ possible deficits in memory, information-processing, concept formation, problem-solving, and concentration.²² One woman with MS-related cognitive dysfunction described her experience while working for a newspaper: "When I’d proofread my work, I would find that I frequently switched around the letters in words, the words in sentences, the sentences in paragraphs, and anything else that wasn’t stapled to the computer screen."⁸

MENTAL DISORDERS

Depression

One half of patients with MS will experience depression during their lifetime.² Depression in these cases is complex, with neuropathologic and emotional components. Possible causes and underlying factors related to MS depression include:²³

• disease activity, especially relapse onset
  
  
• neuropathologic changes in areas of the brain
  
  
• neuroendocrine or psychoneuroimmunologic changes
  
  
• reactions to alterations in life circumstances
  
  
• medication side effects.

Symptoms of depression include ongoing and pervasive sadness; loss of interest in important activities and relationships; feelings of hopelessness and despair, which may include suicidal thoughts; and changes in sleeping and eating patterns. Counseling and antidepressant medications can be very helpful.²⁴ Aggressive intervention is essential in women at high risk for suicide. Women with MS may be particularly vulnerable to depression during pregnancy, the postpartum period, and the early child-rearing years. In fact, some might consider postponing pregnancy to begin or maintain treatment with an immunomodulating agent.

MS symptoms that are not adequately controlled may also contribute to depression. One woman with MS remarked, "I think I am depressed because I am so tired, not because of anything else. I used to be very active, but now I get tired walking from my bedroom to my living room."⁸

Other Emotional Problems

The first emotional challenge encountered by patients with MS is dealing with the diagnosis. Fear and panic may be followed by denial, and then by anger. In contrast, some women, especially those who had worried about having a potentially fatal condition such as a brain tumor or about the fact that they might be "going crazy," may be relieved when they learn of their diagnosis. These initial feelings are generally followed by sadness and grieving as they incorporate the concept of chronic disease into their self-image.²⁵ Emotional turmoil resurfaces with disease relapses; with decisions regarding disclosure to employers, new companions, friends, or neighbors; and with other events that bring the MS diagnosis to the fore. One element of MS causes consistent and pervasive distress throughout the disease course: the unpredictability of life on both a daily basis and a long-term basis. A study examining coping mechanisms used by women to deal with MS reported two factors as strongly fostering adaptation: primacy of relationships among family, friends, and a higher power; and spiritual well-being.²⁶

Successful coping requires attention to emotional as well as physical factors precipitated by MS. Information about counseling services can be obtained by calling the National Multiple Sclerosis Society at (800) FIGHT-MS or by visiting their Web site at www.nationalmssociety.org. In addition to providing access to professional counselors, the society is affiliated with more than 2,000 self-help groups, which provide peer support for patients with MS and for their families.

Sexual Issues

Sexual dysfunction is common in women with MS, as it is for most women with neurologic disease. The cause of this problem is multifactorial, with both physiologic and psychological components affecting arousal and climax.²⁷ MS-related sexual dysfunction is classified as primary, secondary, or tertiary, as follows:

• Primary dysfunction results from neurologic impairment that interferes with sexual response (eg, decreased libido, decreased vaginal lubrication, unpleasant or diminished vaginal sensation, reduced capacity for orgasm). Helpful interventions include use of a vibrator and water-soluble commercial lubricants. Anecdotal reports suggest that sildenafil (Viagra) may be of value.
  
  
• Secondary dysfunction entails MS symptoms that interfere with sexual function (eg, abductor spasms of the thighs, incontinence, weakness, hand tremors). These symptoms generally respond to appropriate therapy; weakness and hand tremor are the most intractable.
  
  
• Tertiary dysfunction involves psychosocial factors that adversely affect sexual function (eg, decreased self-esteem, depression). Counseling is advised for women who face these difficulties.

Clinicians must address all these factors if sexual health is to be achieved and maintained.

MOTHERHOOD

MS-stricken mothers are concerned about the effect of their illness on their children. They worry about the impact of fatigue and disability, as well as the stigma of the disease. In one study, researchers analyzed videotapes of mothers with or without MS who were interacting with their 8- to 12-year-old daughters.²⁸ Results were reassuring: They noted similar rates of receptive, directive, and dissuasive behaviors for mothers with MS and their daughters relative to the control-group pairs. Another study examined the effects of fatigue and MS exacerbations on maternal support.²⁹ Researchers found that mothers’ functional status and fatigue were not significant predictors of the physical affection they displayed during relapses. However, the mothers significantly underestimated the extent of their own ability to express physical affection. Again, these findings were reassuring for mothers who may overestimate the impact of their disease on emotional relationships with their children.

Ideally, women with MS can communicate honestly and openly with their children about their disease. Mothers tend to underestimate their children’s ability to handle their disease, and tend to limit information with the intent of "sparing" them. Children tend to feel isolated and inflate their impression of crisis within the family when not given clear explanations of their mother’s limitations and related family concerns.

WOMEN WITH DISABILITIES

Disabilities create unique socioeconomic problems. Women who work outside the home need encouragement to continue to do so, for the added income and the enhanced self-esteem, as well as for the health insurance coverage. Women with MS should make sure that all their current health care needs, as well as their anticipated needs (ie, those related to future disability), will be covered. Several barriers to optimal health care for women with disabilities have been identified:³⁰

• physical access barriers, including architectural inaccessibility and inaccessible examination equipment
  
  
• misconception by women with disabilities that they are not prone to the general health problems of the overall population
  
  
• limited understanding on the part of health care professionals of the interaction between patients’ health and their disabilities, manifested by discomfort confronting this deficiency.

CONCLUSION

Women with MS should understand that many of their symptoms are manageable with medications, counseling, or physical interventions, and that they can lead active, productive lives despite their disease.

Nancy Holland, EdD, is vice president of the Professional Resource Center, National Multiple Sclerosis Society, New York, NY. Barbara Giesser, MD, is associate professor, Clinical Neurology, Arizona Health Sciences Center, Tucson.

REFERENCES

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