PM&R
Volume 1, Issue 7 , Pages 601-603, July 2009

Giving Patients With Multiple Sclerosis What They Want

Department of Rehabilitation Medicine, and Department of Neurology, University of Washington, 1959 NE Pacific Street, Seattle, WA 98195†

Article Outline

 

I am fond of telling the story of the patient with multiple sclerosis (MS) who walked into our clinic with obvious needs. She (at the present time, 4 of 5 patients with MS are women⁎) did not want to hear any more about T cells attacking her myelin or any more about “blocking” antibodies; she wanted help walking. Many patients with MS seek assistance at an MS clinic to help with function. Typically, it might be to help prevent tripping and falling, although in other cases it might be a plea for aid to help her continue her employment. Patients may also complain of fatigue, which is now accepted as the most common symptom of MS, and a symptom that we were first to report in the 1980s [1, 2]. Patients often are aware that they also are depressed, keep forgetting things, or are having problems with their bladder, the so-called “hidden disabilities” that are not readily apparent to an observer during a typical medical visit [3].

What does it sound like this patient needs? If you answered “rehabilitation,” you are right. Many patients know that they are not doing well but often feel that their needs are not being met.

Patients at all stages of MS, from mild to severe, want help with function. This function is the essence of our specialty and is even in the tagline of this journal. In 2009—as has always been the case and despite available drugs—rehabilitation is still the only way to improve function in persons with MS [4]. The standard way to measure impairment and disability in MS is the Kurtzke Expanded Disability Status Scale (EDSS), a scale from 0 to 10, with higher numbers indicating worsening disability [5]. A bed-bound patient with MS (EDSS = 8.0) can become more functional by training her in the use of a wheelchair (improving her EDSS to 7.0). Thus, she is now “wheelchair-enabled” (we must stop using the pejorative term “wheelchair-bound”). By prescribing an ankle-foot orthosis (AFO) and walker or cane, her function can be further improved (to an EDSS of 6.5 or even 6.0).

The platform upon which management of all RRMS rests is medication to reduce exacerbations and decrease the rate of worsening of the disease. There are currently 6 disease-modifying therapies (DMTs) approved by the U.S. Food and Drug Administration to manage exacerbations and progression. Three of these are β-interferons (ie, interferon-β1a [Avonex; Biogen], [Rebif; Ares-Serono]; interferon-β1b [Betaseron; Bayer]); one is a randomly ordered polymer of the 4 amino acids glutamate, lysine, alanine, and tyrosine (glatiramer acetate [Copaxone; Teva]); another is the anticancer drug mitoxantrone; and the most recent is a humanized monoclonal antibody that prevents T cells from entering the central nervous system (natalizumab [Tysabri]). All of these therapies do not work equally well in all patients. Patients need to be aggressively treated, including optimization of dose and frequency and, in some cases, given combination therapies [6, 7].

In addition to the DMTs, there is another medical treatment that is almost uniformly used in the management of MS. Because the DMTs are not completely effective in suppressing exacerbations in all patients with MS, exacerbations need to be treated. The standard approach is to use intravenous methylprednisolone (Solumedrol), typically at 1.0 g for 3 consecutive days. If used early in an attack, its use has been shown to reduce the severity and duration of the attack, and there are some data demonstrating that it even has benefit for the course of the disease [8].

At the time of this writing (March 2009), one drug that might actually increase physical performance in patients with MS has not yet been approved by the Food and Drug Administration. This drug, 4-aminopyridine (Fampridine), improves impulse conduction in nerve fibers in which the myelin has been damaged. Fampridine has been in clinical studies for some time but has not yet been released for clinical use. When approved, this drug may aid rehabilitation in patients with MS; it is a drug with which the physiatrist should be familiar [9].

Once medical management has been optimized, a patient needs to be evaluated carefully to assess weakness, spasticity, contractures, ataxia, sensory and proprioceptive impairment, bladder dysfunction, depression, cognitive impairment, visual impairment, and vocational issues [10]. Here is where a rehabilitation-based MS clinic shines. All of these can be improved with the use of standard rehabilitation techniques, including the team management approach. Per the title of this editorial, this is what most patients with MS want.

Although it is not the purpose of this editorial to go into detail on the management of each of these functional areas, some comment should be made regarding the physical restoration of gait as an example of how a very important problem for many patients with MS can be managed. The physician must work with a patient to reduce contractures and spasticity, to improve strength and endurance, and to substitute for insufficient afferent input from the lower limbs. The presence of contractures should be tackled first, and principles of biomechanics should be practiced. As is true in most upper motor neuron diseases, flexion contractures tend to develop at the hip, knee, and ankle. If sufficiently great, these contractures will prevent the center of gravity during the stance phase from falling posterior to the hip joint, anterior to the knee joint, and slightly ahead of the ankle. With such contractures, even a person without MS would have trouble standing and walking. (As a general rule, an AFO should never be ordered as long as a patient has a significant ankle flexion contracture; an AFO fit to a contracted ankle would “fix” the ankle in that position, effectively lengthening the affected leg, making that limb difficult to advance through the gait cycle.)

Simultaneous with a contracture-stretching program, spasmolytic oral agents such as baclofen (Liorasal) and antispastic injections such as botulinum toxin can be used to reduce spasticity and facilitate the ease and permanence of the patient's stretching program. Even very paretic muscles can and should be strengthened. It has been shown that both mildly and severely paretic MS muscles can be strengthened with the use of a standard DeLorme progressive resistive exercise program [11]. Furthermore, the slight increase in strength achieved in more severely paretic patients can have an enormous benefit on improving function [12]. As a final step in improving gait in these patients, an appropriate cane or walker might be prescribed.

This example is only one of how managing patients with MS by the use of rehabilitation principles can improve their lives. In all other areas of comprehensive MS rehabilitation, specific rehabilitative techniques can be applied. These methods and techniques can be found in standard rehabilitation textbooks [13, 14].

Unfortunately, the progression of MS cannot be completely halted in most patients. Although all medical treatments are effective in reducing exacerbations in RRMS, not all patients are aggressively managed for the maximum-possible reduction in the exacerbation rate. However, it is even more important that at the present time many patients with MS may not be receiving optimal rehabilitative services. Whereas typically there is an attempt to provide good medical management for these patients, there is frequently a lack of sophisticated appreciation of the management of the various physical disabilities. Periodic monitoring of the subtle interplay among contractures, weakness, spasticity, and clonus may not be carried out. For example, some patients who are thought to require a brace really may need management of their spasticity and dynamic clonus.

Furthermore, as a patient changes neurologically, the rehabilitation program needs to be reassessed, and appropriate modifications should be made. “Fine-tuning” and attention to such details are the key to optimal MS rehabilitative management. Finally, as is true in any disorder that produces disability, the management of handicap and disability requires a good functional evaluation [15]. What is it that the patient cannot do that she needs to do to maintain function? Substitutive interventions (eg, a wheelchair for severe gait impairment) need to be employed as in any other disability [16].

We may be entering a new phase in the understanding of the problems MS produces. Rehabilitationists know the importance of evaluating functional deficits in various systems (eg, motor, cognition, etc), but what is unique in the management of MS is that these multiple impairments, when present in a given individual, may actually cause that individual to function less well than might be expected when each impairment is evaluated independently. For example, it is not uncommon for a physician who specializes in MS to see a patient who complains of falling but who, on examination, has adequate leg and ankle strength. When asked when these falls occur, the patient typically may say that it is when engaging in multitasking activities such as walking and talking with a friend. Proprioception may have been lost, and the visual/auditory/cognitive compensation the patient has developed may be compromised when engaged in multiple activities. Another even more common example is the interference of fatigue with strength. Patients may be strong on testing but function very poorly because of the development of motor fatigue, which interferes with their functional activities. We are just beginning to understand these interactions. When we understand them more fully, we will be able to have a better appreciation of why patients with MS have the problems they do, and we will be able to do a better job of treating them [17].

My contentions in this editorial have been 3: (1) Most patients with MS will benefit from appropriate rehabilitative services (although many may not be aware that they exist); (2) these services are insufficiently provided; and (3) specialists in rehabilitation medicine are best trained to provide them. There are 400,000 patients with MS in the United States [18]. Relatively speaking, patients with MS are a well-educated population [19]. The mean age of onset is the late twenties, and the disease does not appreciably shorten lifespan. Therefore, this population of patients presents between 16,000,000 and 20,000,000 patient-years of continuing function and productivity that can be enhanced with the provision of appropriate rehabilitative services. That is a lot of business for those of us rehabilitating persons with MS.

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References 

  1. Freal JE, Kraft GH, Coryell JK. Symptomatic fatigue in multiple sclerosis. Arch Phys Med Rehabil. 1984;65:135–138
  2. Kraft GH, Freal JE, Coryell JK. Disability, disease duration, and rehabilitation service needs in multiple sclerosis: patient perspectives. Arch Phys Med Rehabil. 1986;67:164–168
  3. Kraft GH, Johnson KL, Yorkston K, et al. Setting the agenda for multiple sclerosis rehabilitation research. Mult Scler. 2008;14:1154–1156
  4. Kraft GH. Rehabilitation still the only way to improve function in multiple sclerosis. Lancet. 1999;354:2016–2017
  5. Kurtzke JF. Rating neurologic impairment in multiple sclerosis: An expanded disability status scale (EDSS). Neurology. 1983;33:1444–1452
  6. Durelli L, Verdun E, Barbero P, et al. Every-other-day interferon beta-1b versus once-weekly interferon beta-1a for multiple sclerosis: Results of a 2-year prospective randomized multicentre study (INCOMIN). Lancet. 2002;359:1453–1460
  7. Goodin DS, Frohman EM, Garmany GP, et al. Disease modifying therapies in multiple sclerosis: report of the Therapeutics and Technology Assessment Subcommittee of the American Academy of Neurology and the MS Council for Clinical Practice Guidelines. Neurology. 2002;58:169–178
  8. Zivadinov R, Rudick RA, De Masi R, et al. Effects of IV methylprednisolone on brain atrophy in relapsing-remitting MS. Neurology. 2001;57:1239–1247
  9. Goodman AD, Brown TR, Krupp LB, et al. Sustained-release oral fampridine in multiple sclerosis: a randomized, double-blind, controlled trial. Lancet. 2009;373:732–738
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  15. Stolov WC, Hays RM. History and physical examination in chronic disease and disability. In:  Hays RM,  Kraft GH,  Stolov WC editor. Chronic Disease and Disability: A Contemporary Rehabilitation Approach to Medical Practice. New York, NY: Demos; 1994;p. 3–26
  16. Stolov WC, Hays RM, Kraft GH. Treatment strategies in chronic disease. In:  Hays RM,  Kraft GH,  Stolov WC editor. Chronic Disease And Disability: A Contemporary Rehabilitation Approach to Medical Practice. New York, NY: Demos; 1994;p. 27–31
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  18. NMSS. About MS: Who Gets MS. New York City: National Multiple Sclerosis Society; 2006;
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  • † Disclosure: nothing to disclose
  • ⁎ Interestingly, the ratio of women to men with relapsing-remitting MS (RRMS) has changed significantly during the past century. Dr. John Kurtzke, a pioneer in research and care of patients with MS, told me that in the early part of the 20th century, the ratio was 1:1. When he studied the distribution after World War II, it was 2:1. In the 1980s the ratio shifted again and was 2.5:1, and data we will be presenting at the meeting of the Consortium of MS Centers in May 2009 indicate it is now 4:1.

 Disclosure Key can be found on the Table of Contents and at www.pmrjournal.org

PII: S1934-1482(09)00342-6

doi:10.1016/j.pmrj.2009.03.008

PM&R
Volume 1, Issue 7 , Pages 601-603, July 2009

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