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Multiple Sclerosis: A Self-Care Guide to WellnessSecond Edition

Nancy J. Holland, EdD, RN, MSCNVice President, Clinical ProgramsNational Multiple Sclerosis SocietyNew York, New York

and

June Halper, MSCN, ANP, FAANExecutive Director, Gimbel Multiple Sclerosis CenterExecutive Director, Consortium of Multiple Sclerosis CentersExecutive Director, International Organization of MS NursesTeaneck, New Jersey

http://www.demoshealth.com


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Demos Medical Publishing, LLC. 386 Park Avenue South, New York, NY 10016, USA

© 2005 by Paralyzed Veterans of America. All rights reserved. This book is protectedby copyright. No part of it may be reproduced, stored in a retrieval system, or trans-mitted in any form or by any means—electronic, mechanical, photocopying, record-ing, or otherwise—without the prior written permission of the publisher.

Library of Congress Cataloging-in-Publication Data

Holland, Nancy J.Multiple sclerosis : a self-care guide to wellness / Nancy J. Holland and June Halper.

— 2nd ed.p. cm.

Includes index.ISBN 1-932603-07-7 (pbk. : alk. paper)

1. Multiple sclerosis—Popular works. 2. Self-care, Health. I. Halper, June. II. Title.RC377.H65 2005616.8'34—dc22

2004030482



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Dedication

In memory of Labe C. Scheinberg, MD and Pamela F. Cavallo, MSW, ACSW.

Dr. Labe C. Scheinberg passed away on February 21, 2004. Dr. Scheinberg hada brilliant mind, quick wit, and a sensitivity to the needs of others. He was apioneer in MS care and research, and was well known for his knowledge ofscience and literature. He led the fight against MS in symptomatic managementincluding psychosocial and spiritual care. Dr. Scheinberg is missed today andwill be missed by future generations of patients, families, and the MS team.

Pamela Cavallo (1947–2001) was the former Director of the Clinical ProgramsDepartment of the National Multiple Sclerosis Society. Her entire careerfocused on ways to help people with MS and their families have better quali-ty of life. She implemented her vision with programs aimed at people with MSand their families to end the devastating effects of this disease.



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Acknowledgments

WE WOULD LIKE TO THANK many people for their encouragement and sup-port in this project: Thomas E. Stripling, Elinor Tucker, and Jim Angelo

of the Paralyzed Veterans of America for their dedication to the fight againstMS; Dr. Vivian Beyda of the United Spinal Association for always seeking newideas; the National Multiple Sclerosis Society, the Consortium of MultipleSclerosis Centers, and all organizations seeking to help people with MS andtheir families; our own families for their patience and support; and last, butnot least, Dr. Diana M. Schneider of Demos Medical Publishing, for her wit,wisdom, and sharp pencil that have helped make MS publications widelyavailable during the past decade.



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John Booss, MDNational Director of NeurologyDepartment of Veterans Affairs VA Connecticut Health Care SystemWest Haven, Connecticut Professor of Neurology and Laboratory

MedicineYale University School of MedicineNew Haven, Connecticut

Pamela F. Cavallo, MSW, ACSW(deceased)

Director, Clinical ProgramsNational Multiple Sclerosis SocietyNew York, New York

Thomas D. Davies, AIAArchitectAnnapolis, MarylandConsultant Architect Paralyzed Veterans of AmericaWashington, DC

Frederick W. Foley, PhDAssociate Professor of PsychologyYeshiva UniversityAlbert Einstein College of MedicineBronx, New YorkDirector, Neuropsychology and

Psychosocial ResearchGimbel Multiple Sclerosis CenterHoly Name HospitalTeaneck, New Jersey

Debra Frankel, MS, OTRSenior AssociateHealth Services Research and EvaluationAbt Associates Inc.Cambridge, MassachusettsSenior ConsultantNational Multiple Sclerosis SocietyNew York, New York

Susan Goodman, MA, RD, CDN, CDEDietitianBrookdale Department of Geriatrics and

Adult DevelopmentDivision of Experimental Diabetes and

AgingMount Sinai School of MedicineNew York, New York

Joseph B. Guarnaccia, MDDirector, Multiple Sclerosis Treatment

CenterDerby, ConnecticutDirector, Multiple Sclerosis Center of Care

New EnglandEast Greenwich, Rhode IslandAssistant Clinical ProfessorDepartment of NeurologyYale UniversityNew Haven, Connecticut

Linda Guiod, RN, BA, BSNVice President of Chapter ProgramsNational Multiple Sclerosis SocietyCentral New England ChapterWaltham, Massachusetts

June Halper, MSCN, ANP, FAANExecutive DirectorGimbel Multiple Sclerosis CenterHoly Name HospitalExecutive Director, Consortium of Multiple

Sclerosis CentersExecutive Director, International

Organization of MS NursesTeaneck, New Jersey

Deborah Hertz, MPHNational Director, Medical ProgramsNational Multiple Sclerosis SocietyNew York, New York

vii

Contributors



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Richard W. Hicks, PhDFormer DirectorThe Huega CenterEdwards, Colorado

Nancy J. Holland, EdD, RN, MSCNVice President, Clinical ProgramsNational Multiple Sclerosis SocietyNew York, New York

Brian Hutchinson, PhDPresident and Chief Executive OfficerThe Huega CenterEdwards, Colorado

Rosalind C. Kalb, PhDDirector, Professional Resource CenterNational Multiple Sclerosis SocietyNew York, New York

Patricia Kennedy, RN, CNP, MSCNNurse PractitionerRocky Mountain Multiple Sclerosis CenterEnglewood, Colorado

Nicholas G. LaRocca, PhDDirector, Health Care Delivery and Policy

Research ProgramNational Multiple Sclerosis SocietyNew York, New York

Nancy T. Law, BAVice President, Client ProgramsNational Multiple Sclerosis SocietyDenver, Colorado

Linda Lehman, MSN, RNCS, FNPNanuet, New York

Carol Peredo Lopez, AIANational Architecture DirectorParalyzed Veterans of AmericaWashington, DC

Dorothy E. Northrop, MSW, ACSWNational Director, Clinical ProgramsNational Multiple Sclerosis SocietyNew York, New York

Beverly Noyes, PhD, LPC Director, Program and Staff Development National Multiple Sclerosis SocietyDenver, Colorado

Margie O’Leary, MSN, RN, MSCNClinical Research Nurse Director Department of UrologyUniversity of PittsburghPittsburgh, Pennsylvania

Patricia A. O’Looney, PhDDirector of Biomedical Research ProgramsNational Multiple Sclerosis SocietyNew York, New York

Mary Ann Picone, MDMedical DirectorGimbel Multiple Sclerosis CenterHoly Name HospitalTeaneck, New Jersey

James H. Rimmer, PhDProfessor, Department of Disability and

Human DevelopmentDirector, National Center on Physical

Activity and DisabilityUniversity of Illinois at ChicagoChicago, Illinois

Audrey Sorgen, PhDDenver, Colorado

Thomas E. StriplingDirector of Research, Education and

Practice GuidelinesParalyzed Veterans of AmericaWashington, DC

Frances Tromp van Holst, OTR/L, CDRSOccupational TherapistCertified Driving Rehabilitation SpecialistDepartment of Rehabilitation MedicineUniversity of Washington Medical CenterSeattle, Washington

Teresa Valois, OTR/L, ATP, CDRSManager, Assistive TechnologyProvailSeattle, Washington

viii



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ix

Preface

MULTIPLE SCLEROSIS is a disease of the central nervous system that has a far-reaching and variable impact on young adults; it can have profound phys-

ical, social, and psychological consequences for patients and their families. MSis a disease that has evolved from the mysterious “crippler of young adults” to,more recently, one that has generated a great deal of public interest due tohighly publicized treatments, both conventional and unconventional.

Impairments in MS are the result of demyelination in the brain or spinalcord or both, and manifest themselves in mild sensory symptoms, weakness,fatigue, bowel or bladder dysfunction, tremor, incoordination, or paralysis.These impairments and their many manifestations can result in social, emotion-al, vocational, educational, and sexual disruptions. This book is designed toempower those affected by multiple sclerosis with updated information aboutMS care, available resources, and other valuable tools to remain well despitechronic illness. It is the second edition of a book that has proven valuable topeople with MS who are impacted by the disease on a day-to-day basis.

The philosophy of each chapter is consistent with a phrase coined by theNational MS Society: “Knowledge is power,” and your authors and editorshope that each reader takes an active role in planning and implementinghealthcare and self-care activities and acts as a consultant to his or her health-care team. The goal of our work is to support the development of an MSExpert Person who is challenged by MS, but who can overcome problemswith realistic and appropriate solutions.

Whether diagnosed for a few years or having lived with the disease forsome time, the person with MS will find in this book many practical tips onself-care designed to promote maximum independence, well-being, andproductivity. Despite the diagnosis, wellness can be achieved with knowl-edge and commitment.

This book was developed in partnership with and under the auspices ofthe Paralyzed Veterans of America, which has made a major and continuingcommitment to multiple sclerosis care.



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xi

Foreword

SINCE 1998, when Paralyzed Veterans of America (PVA) first publishedMultiple Sclerosis: A Guide to Wellness, great strides have been made in

research findings and treatment options. For this reason, PVA is proud to pres-ent this newly updated edition of the “MS Wellness Guide,” as it has come tobe called.

Edited by Nancy J. Holland, RN, EdD, MSCN and June Halper, MSCN, ANP,FAAN, this second edition has been expanded to include new chapters on thepromise of research, disease management, general health issues, managingfinancial resources, health insurance options, and community living options.Each of the other chapters has been updated and revised to reflect advancesin the field and changing management strategies. The table of contents hasbeen reorganized to facilitate finding information of special interest to thereader, and the appendix on “Helpful Resources” has been greatly expanded.

The new edition continues to focus on staying well in the presence of MS.Wellness is a concept that does not normally come to mind when we thinkabout a disease. We usually think of diseases in terms of curable or incurable.But MS is a disease that—while incurable—can be managed and yields tomany treatments and therapies. Although not cures, they can provide thepatient with a great deal of control over his or her experience of well-being.

This book covers a broad spectrum of topics related to MS and its effects,focusing especially on the needs of those who have been living with the dis-ease for some time. Practical tips on self-care are designed to promote maxi-mum independence, well-being, and productivity. The objective is to empha-size that wellness can be achieved with knowledge and commitment.

PVA has been pleased to partner with Demos Medical Publishing in updat-ing and producing this new edition. We are proud to see it take its placeamong the other books in the Demos catalog of reliable, practical guides onliving with multiple sclerosis.

Randy PlevaNational PresidentParalyzed Veterans of America



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xii

About the Paralyzed Veterans of America

FOUNDED IN 1946, PVA is the only congressionally chartered veterans serviceorganization dedicated solely to individuals with spinal cord injury or dis-

eases. PVA has 34 local chapters around the country and represents over21,000 members. Approximately 20 percent of PVA members have MS. Toserve them better, PVA has published a number of books on MS, promotedthe development of MS Centers of Excellence within the Department ofVeterans Affairs and engaged with other organizations in vigorous efforts topromote MS program building.

The first “Wellness Guide” has been one of PVA’s most popular publica-tions. Through the partnership with Demos, PVA hopes to be able to reach aneven wider audience.



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xiii

Contents

CONTRIBUTORS vii

PREFACE ix

FOREWORD: RANDY L. PLEVA, SR., PVA NATIONAL PRESIDENT xi

1. AN OVERVIEW OF MULTIPLE SCLEROSIS

Joseph B. Guarnaccia and John Booss 1

MANAGING THE DISEASE PROCESS AND ITS SYMPTOMS2. HOPE THROUGH RESEARCH

Patricia A. O’Looney 11

3. DISEASE MANAGEMENT

June Halper 17

4. FATIGUE

June Halper 23

5. PAIN MANAGEMENT

Mary Ann Picone 29

6. MAINTAINING JOINT FLEXIBILITY AND MOBILITY

June Halper and Nancy J. Holland 33

7. BLADDER AND BOWEL MANAGEMENT

Nancy J. Holland and Margie O’Leary 43

8. SKIN CARE

Linda Guiod 51

9. ADDRESSING COGNITIVE PROBLEMS

Nicholas G. LaRocca and Rosalind C. Kalb 61

10. ADJUSTING TO CHANGES IN SEXUAL FUNCTION IN MSFrederick W. Foley and Audrey Sorgen 67

11. UNDERSTANDING COMPLEMENTARY AND ALTERNATIVE TREATMENT

Patricia Kennedy and Nancy J. Holland 73

HEALTH, LIFESTYLE, AND EMOTIONAL ISSUES12. GENERAL HEALTH ISSUES

June Halper 77



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xiv

13. EXERCISE OPTIONS AND WELLNESS PROGRAMS

Brian Hutchinson and Richard W. Hicks 93

14. YOUR LUNGS AND HEART

Linda Lehman and June Halper 101

15. THE ROLE OF NUTRITION IN MULTIPLE SCLEROSIS

Susan Goodman 107

16. COPING AND STRESS MANAGEMENT

Rosalind C. Kalb and Nicholas G. LaRocca 117

IN THE COMMUNITY

17. WORK, FAMILY, AND COMMUNITY PARTICIPATION

Nancy T. Law and Beverly Noyes 123

18. DRIVING AND OTHER TRANSPORTATION ISSUES

Frances Tromp van Holst and Teresa Valois 129

19. FITNESS AND RECREATION

James H. Rimmer 135

LIFE PLANNING

20. MAKING YOUR HOME SAFER AND MORE ACCESSIBLE

Thomas D. Davies and Carol Peredo Lopez 141

21. MANAGING FINANCIAL RESOURCES

Thomas E. Stripling and Dorothy E. Northrop 149

22. HEALTH INSURANCE OPTIONS

Dorothy E. Northrop 153

23. COMMUNITY LIVING OPTIONS

Debra Frankel 159

24. OBTAINING PERSONAL ASSISTANCE

Debra Frankel and Pamela F. Cavallo 163

APPENDICES

A. HELPFUL RESOURCES FOR PEOPLE WITH MSDeborah Hertz and Nancy J. Holland 173

B. MEDICATIONS COMMONLY USED IN MULTIPLE SCLEROSIS 187

C. GLOSSARY

Rosalind C. Kalb 245

INDEX 261



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MULTIPLE SCLEROSIS (MS) is a disease ofmyelin, the insulating cover around the

nerves of the central nervous system (CNS:brain, optic nerves, and spinal cord) (seeFigure 1.1), that becomes damaged in MS. MSmost commonly begins in young adulthoodand affects about twice as many women asmen. Although its initial symptoms vary great-ly, certain patterns are typical: a previouslyhealthy woman or less frequently, a man, 20to 30 years old suddenly experiences neuro-logic symptoms. These symptoms may rangefrom dimming of vision to numbness in thelegs or body to dizziness or imbalance.Symptoms of this first attack (or exacerbation)usually remit (clear) or improve.

Four general patterns of disease courseare diagnosed as MS (see Figure 1.2).Relapsing-remitting MS is a pattern ofattacks (exacerbations) followed by partialor complete recovery from symptoms(remission). This relapsing/remitting patternmay give way to a pattern of progressivedisability, called secondary progressive MS.

Some individuals rarely experienceremission of symptoms. They have primaryprogressive MS, in which there is steady pro-gression without remissions. A fourth pat-tern, recently defined, is progressive-relaps-ing MS. This is a chronic progressive coursein which infrequent relapses occur.

The reasons for these differences in thecourse of MS are unknown. However, therelapsing-remitting pattern most typicallyaffects young adults, especially women.Older individuals are more likely to havepatterns of progressive MS. In these lattercases, onset is usually after age 40, and menand women are affected equally.

The multiple scars of MS (plaques) canbe seen as pale, well-defined patches scat-

Chapter 1: An Overview of Multiple Sclerosis 1

Chapter 1

An Overview of Multiple SclerosisJoseph B. Guarnaccia, MD and John Booss, MD

Figure 1.1Central Nervous System

Figure 1.2Disease Course Classifications in MS



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tered throughout the brain and spinal cord.They are located in the white matter, whichcontains a high percentage of myelin, aninsulating material that covers sections ofnerve cells that carry electrochemical mes-sages from the nerve cells to “action” partsof the body, such as the eyes or the musclesin the hands or legs. Because many of thesemessages from the brain must travel rela-tively long distances, myelin is critical forimpulse conduction (see Figure 1.3). In MS,myelin is the primary target of an attack bythe body’s immune system, although dam-age to the underlying nerve is now knownto occur. Multiple sclerosis is an autoim-mune (self-immune) disease, because thebody’s immune system mistakenly attackshealthy myelin.

WHO GETS MULTIPLE SCLEROSIS?For decades, medical scientists have soughtclues to causes for the variable incidence ofMS in different parts of the world. The dis-ease is far more common in temperatezones than in the tropics. Zones with low,medium, and high risk for MS are roughlybased on distances north and south of theequator. The north-south or south-northgradient occurs within countries as well. Inthe United States, for instance, MS is more

common in northern states than in southernstates. Possible reasons for these variationsare discussed in the next section.

However, whatever factors in high-riskzones predispose the development of MS,exposure to them during childhood or ado-lescence seems to have the greatest effect. Ifan individual moves after that critical periodfrom a high-risk zone to a lower risk zone,or vice versa, the risk level of the originalhabitat applies. For example, a person whomoves after adolescence from a temperate,high-risk zone to a tropical, low-risk zonewill continue to have a higher risk of devel-oping MS than the population in the tropi-cal zone. What makes this observationintriguing is that MS does not usually beginin individuals until they reach their twentiesand thirties—years or even decades after theperiod when MS is thought to originate.

Location alone does not account for allthe variability, however. Multiple sclerosis isalso more common in people of certain eth-nic or racial backgrounds. Parts of the BritishIsles have the highest concentration of MS inthe world, affecting one out of every hun-dred. Immigrants of Northern Europeandescent have colonized other high-incidenceareas of the world, including the UnitedStates and Canada. By contrast, MS is rare tononexistent among African natives, NativeAmericans, and Laplanders in Scandinavia.

IS MULTIPLE SCLEROSISINHERITED?Because people of similar ethnic or racialcomposition share certain inherited traits,genes may play an important role in MS. ButMS is not a simple genetic disease; that is, itis not due to a defective gene that causesthe disease on its own. However, some indi-viduals may inherit a cluster of genes thatincreases their susceptibility to the disease.

Scientists are investigating genetic fac-tors and how they contribute to the disease.

2 Multiple Sclerosis: A Self-Care Guide to Wellness

Figure 1.3Myelinated Axon



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We know that certain genes control someaspects of immune system development andfunction. It is possible that those or otherunidentified genes may predispose theimmune system to attack CNS myelin.

In some families, more than one individ-ual may have MS, although the chances ofmore than one family member developingthe disease are still low, less than 5 percent.Even for identical twins, who have identicalgenes, the risk is still only about 30 percentthat both twins will have MS.

WHAT ELSE MAY BE IMPORTANTIN CAUSING MULTIPLE SCLEROSIS?The combination of unidentified genes,geographic location, and an abnormalimmune response to myelin has led scien-tists to consider that MS may be caused bya virus. Some viruses can infect the CNS,including, in rare instances, viruses thatcause common childhood diseases. Polio, aonce-common scourge that has been virtu-ally eradicated in industrialized nations,was, like MS, more common in temperateclimates than in the tropics. One hypothe-sis is that paralytic polio does not developin the less stringent sanitary conditions andclose living arrangements that are commonin warmer climates and favor the occur-rence of infections earlier in childhood,when maternal antibodies are still presentand paralysis is much less likely.

The notion of an infectious cause of MSgained support when the disease emerged inthe Faroe Islands, off the coast of England,after occupation by British troops duringWorld War II. It has been speculated thatdogs kept as pets by the British broughtcanine distemper or another virus to theisland, exposing the native human inhabi-tants. However, no links to the canine dis-temper virus have been demonstrated.

Scientists have also speculated that MSresults from altered immune response to

one or more common viral infections, andthat this abnormal response is more likelyto occur when infection is acquired later inchildhood. Many other viruses have beenimplicated and continue to be studied byresearchers as possible causes of MS. Onelarge study found that the disease wasseven times more common in people whohave had infectious mononucleosis, whichis caused by the Epstein-Barr virus. But,however appealing the idea, there is nodirect proof that any one virus causes thedisease.

Other pieces of the puzzle remainunsolved as well. During their reproductiveyears, women are more susceptible to MSthan men. Female hormones, such as estro-gen and progesterone, significantly influ-ence immune function. During pregnancy,women with MS seem to be relatively pro-tected from neurologic attacks. However,the disease has a greater tendency to flarewithin the first six months of the postpartumperiod. These observations, however, arenot absolute. A great majority of womensuccessfully manage both pregnancy andthe postpartum period.

Emotional stress, common infectionssuch as colds or sinusitis, and trauma to theCNS also have been studied as possiblecauses both of MS and of periodic exacerba-tions. Except for the observation that com-mon viral infections often precede exacer-bations, no cause-and-effect relationshiphas been validated in scientifically con-trolled studies.

WHAT IS UNLIKELY TO CAUSEMULTIPLE SCLEROSIS?Some theories of the cause of MS are high-ly speculative. Many books and articles inthe popular press have touted particularcauses of MS and suggested inappropriatetreatments based on unscientific theories.For example, exposure to mercury through




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dental fillings has been cited as a possiblecause of MS; as a result, many people haveasked their dentists to perform costly andinconvenient replacement of fillings. Thereis no scientific evidence to suggest such anapproach.

Likewise, some medical authors havetried to show that diets rich in animal fatsare important in causing and sustaining thedisease, but their findings are not based onsound scientific studies. The NationalMultiple Sclerosis Society (NMSS) recom-mends the dietary guidelines published bythe American Heart Association, in theabsence of any compelling evidence linkingMS to animal fat in the diet.

HOW DOES MULTIPLE SCLEROSISCAUSE SYMPTOMS?The effects of MS occur because messagesto and from the CNS fail to reach their tar-gets properly. Why does this happen? Asnoted, myelin insulates nerves within theCNS. When myelin is lost, messages losestrength because they “leak out” at theplaces where myelin has been damaged ordestroyed. Therefore, the messages eitherslow down or fail altogether. This accountsfor the nerve’s loss of function. Also, the

demyelinated nerve itself becomes unstableand begins to initiate spontaneous nerveimpulses. These impulses are experiencedas pain, the sensation of “pins and needles,”or abnormal movements (see Figure 1.4).

Physical symptoms may include loss ofmuscle strength, clumsiness, altered sensa-tion, decreased sight, or reduced perceptionof the position of the body or limbs inspace. More subtle symptoms include a milddecrease in mental acuity or memory, ormood swings. Plaques in the so-called“silent” areas of the brain do not cause out-ward symptoms. Remission of symptomshas been explained by reduced inflamma-tion in the plaque and remyelination by thecells that make myelin, oligodendrocytes.

COMMON SYMPTOMS OF MULTIPLE SCLEROSISVirtually any aspect of neurologic functioncan be affected by MS, but some symptoms,such as optic neuritis in a young person, arecharacteristic. Optic neuritis usually resultsin partial loss of vision in one eye becauseof inflammatory demyelination of the opticnerve. Vision may be blurred, and colorsmay be difficult to distinguish. Eye move-ment may be uncomfortable.

Double vision, another common symp-tom, is caused by plaques in the brainstem,the part of the brain directly above thespinal cord. Brainstem plaques may alsocause vertigo, a sensation of spinning, ordizziness.

Trigeminal neuralgia, or tic douloureux,also occurs, although this condition is alsocommon in individuals who do not haveMS. Tic douloureux causes sharp, shootingpains in the face, usually precipitated bychewing or speaking.

The cerebellum is the part of the brainthat controls balance and the rhythm ofmuscle movement. Involvement of the cere-bellum and its connections may cause gait

Figure 1.4Demyelinated Nerve



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instability, problems with hand coordina-tion, or slurred speech.

The spinal cord is frequently affected byMS. Individuals sometimes experience asharp, seemingly electrical sensation, calledL’hermitte’s sign, when they flex their necks.Plaques in the spine can cause a variety ofsymptoms, including numbness, weakness,bowel or bladder difficulty, or gait imbal-ance. Plaques in the brainstem or higherlevels of the brain can also cause thesesymptoms, but the hallmark of MS involve-ment in the spinal cord is simultaneousinvolvement of both the right and left sidesof the body.

In addition to muscle weakness, spastic-ity may also occur. This results when com-munication from the brain to the motor cellsthat directly control muscle movement in thespinal cord is interrupted and primitivespinal cord reflexes take over. Spastic weak-ness may cause difficulty in walking becauseconsiderable effort is needed to overcomestiffness in order to raise and propel the legforward. However, spasticity is a boon whenit partially compensates for muscle weak-ness by acting as a “splint” in walking, stand-ing, or transferring.

The concept of spasticity also applies tobladder function. Individuals may experi-ence a sudden urge to urinate and inabilityto hold their urine, even in public places.Other problems are retention of urine or dif-ficulty initiating urination. (Bladder prob-lems are addressed in detail in Chapter 7,“Bladder and Bowel Management.”)

HOW IS MULTIPLE SCLEROSISDIAGNOSED?None of the symptoms described so faroccurs only in MS. Strokes, tumors, or infec-tions can cause the same disabilities whenthey affect the same areas of the brain andspinal cord. Therefore, the diagnosis of MSrequires the exclusion of other neurologic

diseases. Diagnosing MS was a greater prob-lem in the past, before physicians couldproduce sophisticated images of the brainand spinal cord and test other aspects ofneurologic function. In the past, the diagno-sis of MS relied primarily on a patient’s med-ical history and a physical examination.Criteria for the diagnosis required at leasttwo verified neurologic attacks, separated intime, and caused by damage in at least twodifferent areas of the CNS. These criteriareflected the natural history of relapsingforms of MS. Progressive MS could be diag-nosed, in the absence of another knownneurologic condition, after a progressiveworsening of neurologic symptoms over asix-month period.

These criteria have been modified inlight of improved diagnostic tests. Thesetests include magnetic resonance imaging(MRI) of the brain, measuring nerve con-duction through the CNS, and cerebrospinalfluid testing for abnormal proteins or cells.The earlier standard required evidence ofmultiple brain or spinal cord lesions by his-tory and neurologic examination. Nowthese methods can be augmented withimaging and laboratory tests.

The diagnosis of MS should always bemade or confirmed by a neurologist, aphysician who specializes in diseases of thenervous system. It is wrong and potentiallydamaging to say that an individual has thedisease in the absence of positive testresults. However, positive test results shouldbe corroborated by the patient’s medicalhistory, symptoms, and abnormal findingson physical examination.

MRI scans and other test results must becarefully interpreted in light of each per-son’s history and examination. The plaquestypical of MS have been found at autopsyin individuals who never reported symp-toms of the disease during their lifetime.Furthermore, other neurologic diseases canmimic MS, and a skilled physician is




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required to differentiate among them.Equally important, the possibility of MSshould be recognized in patients who haveatypical symptoms, so that costly, unneces-sary, or even potentially hazardous treat-ments are not given for an erroneouslydiagnosed condition.

WHAT ARE THE TESTS FOR MULTIPLE SCLEROSIS?

MAGNETIC RESONANCE IMAGING (MRI)The most revolutionary advance in diagno-sis of MS, as well as other diseases of theCNS, is imaging the brain and spinal cord bymagnetic resonance. The MRI has revolu-

tionized the ability to diagnose MS, and ithas emerged as a primary research tool aswell (see Figure 1.5).

MRI scanning determines the progres-sion of the disease by measuring the sizeand number of both “silent” and activeplaques. The technique is especially usefulin clinical studies of new therapies, becauseit allows unbiased investigators to comparedisease activity and progression by compar-ing the MRI scans of treated and untreatedindividuals.

EVOKED POTENTIALS

Evoked potential tests measure electricaltransmissions in the CNS from the point oforigin, such as the eye or ear, to the placein the brain where the message is received.The tests can measure visual, auditory, andother sensory perceptions.

The tests may consist of a changing visu-al pattern placed in an individual’s field ofsight, a series of clicks delivered to each ear,or a small electrical current delivered to thefinger or toe. The diagnosis of MS is aidedby these tests because demyelination in theCNS results in an increase in the amount oftime needed to transmit electrical messages.

Evoked potentials are useful additions toother tests, particularly the MRI when thebrain scan is normal. Although MRI scan-ning of the brain is very sensitive in detect-ing MS plaques, the technique is less precisein the spinal cord or optic nerve becausethey are smaller areas. Visual evoked poten-tials may be particularly helpful whendemyelination in the optic nerve is not yetsufficient to cause visual complaints by indi-viduals.

CEREBROSPINAL FLUID EXAMINATION

Cerebrospinal fluid surrounds the brain andspinal cord and often reflects disease condi-tions in the CNS. In MS, certain abnormali-ties in the spinal fluid reflect the inflamma-tory nature of the disease. These abnormal-


Figure 1.5MRI of Brain



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ities include the presence of white bloodcells, which are involved in inflammation,and the protein products of these cells.(White blood cells differ from red bloodcells, whose function is to transport oxygento tissues.)

In MS, the number of white blood cellsin the spinal fluid may be mildly elevated,but a more characteristic finding is the pres-ence of inflammatory proteins, called anti-bodies or immunoglobulins. The presenceof these substances in spinal fluid, and theirabsence in the blood, indicates that they arebeing produced within the CNS. Both theamount (IgG index) and properties (oligo-clonal bands) of these proteins indicate CNSinflammation, which is characteristic of MS.

MULTIPLE SCLEROSIS AS A DISEASEOF THE IMMUNE SYSTEMNormally, the immune system is able to dis-tinguish between infectious organisms or for-eign tissues (such as a transplanted organ),which are attacked or rejected, and thebody’s own organs or tissues, which are tol-erated. How white blood cells perform thesefunctions is a fascinating story. The processrequires continual adaptation on the part ofwhite blood cells to recognize—throughreceptors on their surfaces and in proteinsthey make—any disease-producing bacteria,virus, or fungus, and even the body’s owncells that have become cancerous.

Scientists have learned to activate theimmune system—through vaccination—todefend the body against potentially infec-tious challengers. The other side of immuni-ty, however, is that these white blood cellssometimes misrecognize and cause damageto the body’s own cells and proteins. Whiteblood cells that act in this way must bedestroyed or held in check. If the systembreaks down, autoimmune disease mayoccur. The immune system is then said tohave “lost tolerance” to a particular organ or

tissue in the body. Restoration of this toler-ance is the ultimate goal of any treatmentfor autoimmune disease.

In MS, tolerance is lost to myelin in theCNS. By a process that continues to be clar-ified at a rapid rate, white blood cells crossinto the CNS and destroy myelin. Somewhite blood cells specifically misrecognizemyelin, others make antibodies to myelin,and still others digest myelin. Moreover, inkeeping with the natural system of checksand balances in immunity, other classes ofwhite blood cells suppress the inflammato-ry attack.

The ability of scientists to produce anMS-like disease—called experimental aller-gic encephalomyelitis—in laboratory ani-mals has been critical to understanding theimmune process in general and MS in partic-ular. This animal research has been instru-mental in the development and testing oftherapeutic interventions prior to clinicaltesting in humans with MS.

DRUGS USED TO TREAT MULTIPLE SCLEROSISAll accepted medical therapies (see Chapter3 and Appendix C) used to ease or preventattacks of MS or to slow its progress have aneffect—either a suppressive or modifyingeffect—on the immune system. A goodexample are the glucocorticosteroids. Whengiven by intravenous infusion at high dosesfor short periods of time, glucocorticos-teroids have many actions, including thesuppression of white blood cell functions. InMS, glucocorticosteroids are commonly usedto treat exacerbations. Individuals whoreceive intravenous corticosteroids for opticneuritis have had improved visual outcomes.These medications have definite—if uncom-mon—risks, however, which should be dis-cussed with the treating physician. In gener-al, the risks and side effects of short coursesof intravenous corticosteroids are minimal




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when compared with those of daily oralsteroids taken over a long period of time.

Traditionally, long-term treatments for MShave suppressed immune function. Thosethat have been tested and are still usedinclude azathioprine, cyclophosphamide,and methotrexate. Their use may slow dis-ease progression, but individuals takingthese drugs must be carefully monitored bytheir physicians because of the medical risks.

It was not until the advent of the betainterferons in 1993 that a relatively safe, non-toxic, long-term treatment for MS becameavailable. The first drug of this type wasinterferon beta-1b, Betaseron®. Testing in alarge clinical trial showed that interferonbeta-1b could produce a 33 percent decreasein the number and reduce their severity. Itsclinical efficacy was further supported byfindings on MRI scans that the rate of newplaque formation was significantly reduced.Interferon beta-1b is administered by injec-tion just beneath the skin every other day.

In 1996, a second beta interferon, inter-feron beta-1a, Avonex®, was approved fordistribution. It is administered by injectioninto a large muscle once a week. The betainterferons are natural products of cells thatparticipate in immunity. They have a num-ber of modulating effects that tip the bal-ance away from an immune attack.

A third drug is glatiramer acetate,Copaxone®. Glatiramer acetate is a mixtureof four amino acids—the building blocks ofprotein—that have been shown to reduceneurologic exacerbations in individuals withrelapsing/remitting disease. It is hypothe-sized to work either by binding receptorson T-lymphocytes that would otherwisebind myelin basic protein or by stimulatingother subsets of T-lymphocytes that sup-press activated cells.

In 2001, a second interferon beta-1a,Rebif®, was approved in the United Statesafter being available for several years inEurope and Canada.

Beta interferons and glatiramer acetateoffer two distinct advantages over generalimmune suppressants. First, they do not dis-turb general immunity to infections. Second,they have fewer side effects on other organsystems. They therefore appear to be saferto use over long periods of time.Disadvantages of the interferons are theirfrequent side effects, which include fever,chills, muscle aches, depression, and skinreactions at injection sites, particularly com-mon at the beginning of treatment.

Glatiramer acetate is relatively free ofthese side effects. However, some individu-als suffer occasional brief reactions immedi-ately after an injection. These reactions,which consist of flushing, sensations of arapid heartbeat, and shortness of breath,usually resolve within 5 or 10 minutes andare of no known threat to health.

Some individuals with rapidly progres-sive disease benefit from cytotoxic therapies.Mitoxantrone, one such chemotherapy, wasFDA approved in 2000 for individuals withrapidly progressive MS. Presently understudy is the effect of these drugs on prevent-ing long-term disability in individuals whohave relapsing/remitting and progressiveMS, because the underlying immune processis not significantly changed in individualswith these types of the disease.

In 2005, Tysabri® (natalizumab) wasapproved by the FDA for relapsing forms ofMS. Although encouraging early data result-ed in “fast track” approval, one death andother related concerns led to the suspensionof Tysabri®. This was a very disappointingevent, and there is hope that analysis of theproblems may one day lead to re-introduc-tion of natelizumab.

THE FUTURE OF MULTIPLESCLEROSIS TREATMENTSRestoring normal immune tolerance tomyelin without disturbing other functions ofthe immune system is the ultimate goal of




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therapy. As more is understood about thenatural mechanisms for establishing andmaintaining this tolerance, new drugs willbe designed to treat MS. Our knowledge ofimmune regulation is built partly on thetremendous strides made in this century inaugmenting with vaccines the immune sys-tem’s ability to fight infectious diseases thatonce were uniformly fatal or disabling.Strategies for treating MS and other autoim-mune diseases, and for tolerating transplant-ed organs, may include vaccines to train theimmune system not to react.

For individuals who are disabled fromMS, there is hope that some day demyelina-tion will be reversible or that myelin can beregenerated in the CNS. Scientists are inves-

tigating chemical substances that stimulatemyelin growth and nerve repair, as well asthe transplantation of myelin-producingcells to sites of damage. So far, most of thiswork is confined to animals, but it is antici-pated that clinical trials will be performedon humans in the not-so-distant future.

The horizon for individuals with MS isbrighter now than at any other time. Therevolution in biotechnology has made mod-ern treatments for MS possible and will con-tinue to provide novel strategies for thedevelopment of newer and better therapies.People with MS, their families, and theircare partners can look to the future withgreat optimism.



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