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Professor of Neurology University of Miami School of Medicine and

Bob Hope Parkinson Research Center

JONES AND BARTLETT PUBLISHERS

Sudbury, Massachusetts BOSTON TORONTO LONDON SINGAPORE

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Copyright © 2006 by Jones and Bartlett Publishers, Inc.

All rights reserved. No part of the material protected by this copyright may be reproduced or utilized in any form, electronic or mechanical, including photocopying, recording, or by any information storage and retrieval system, without written permission from the copyright owner.

ISBN-13: 978-0-7637-4763-3 ISBN-10: 0-7637-4763-7

Production Credits

Chief Executive Officer: Clayton Jones Chief Operating Officer: Don W. Jones, Jr. President, Higher Education and Professional Publishing: Robert W. Holland, Jr. V.P., Sales and Marketing: William J. Kane V.P., Design and Production: Anne Spencer V.P., Manufacturing and Inventory Control: Therese Connell

Executive Publisher: Christopher Davis Special Projects Editor: Elizabeth Platt Associate Editor: Kathy Richardson Associate Marketing Manager: Laura Kavigian Cover Design: Kate Ternullo Cover Image: ©Photos.com Printing and Binding: Malloy Inc. Cover Printing: Malloy Inc.

Library of Congress Cataloging-in-Publication Data

Sheremata, William A. 100 questions & answers about multiple sclerosis / William A. Sheremata.

p. cm. Includes index. ISBN 0-7637-4763-7 (pbk.) 1. Multiple sclerosis. I. Title: One hundred questions and answers about multiple sclerosis. II. Title. RC377.S55 2006 616.8'34--dc22

2005036042

2690

Printed in the United States of America 10 09 08 07 10 9 8 7 6 5 4 3 2

Contents

Foreword by Montel Williams v

Foreword vii

Introduction viii

Dedication xi

Part 1. The Basics 3

Questions 1-15 provide fundamental information about multiple sclerosis, including:

• What is multiple sclerosis?

Part 2. Symptoms 15

Questions 16-22 describe common symptoms of multiple sclerosis, such as:

• What are the most common symptoms of MS?

Part 3. Diagnosis, Identification, and Prognosis 27

Questions 23-37 describe diagnosis, identification, and prognosis of different forms of MS, including:

• Do all people with MS become disabled?

Part 4. Causes of Multiple Sclerosis 47

Questions 38-56 discuss factors that contribute to development of MS, such as:

• What is the role of the immune system in MS?

Part 5. Living with Multiple Sclerosis

Questions 57-67 discuss some of the changes MS causes in day-to-day life and how to cope with them:

• How do I learn to cope with MS now that I've been diagnosed?

• How does MS affect sexual function and fertility?

• Should I seek counseling?

Part 6. Treatment 83

Questions 68-100 address treatment options for multiple sclerosis:

• Are alternative treatments useful?

• What are the different drugs that treat MS attacks?

The authors, editor, and publisher have made every effort to provide accurate information. However, they are not responsible for errors, omissions, or for any outcomes related to the use of the contents of this book and take no responsibility for the use of the products described. Treatments and side effects described in this book may not be applicable to all patients; likewise, some patients may require a dose or experience a side effect that is not described herein. The reader should confer with his or her own physician regarding specific treatments and side effects. Drugs and medical devices are discussed that may have limited availability controlled by the Food and Drug Administration (FDA) for use only in a research study or clinical trial. The drug information presented has been derived from reference sources, recently published data, and pharmaceutical research data. Research, clinical practice, and government regulations often change the accepted standard in this field. When consideration is being given to use of any drug in the clinical setting, the healthcare provider or reader is responsible for determining FDA status of the drug, reading the package insert, reviewing prescribing information for the most up-to-date recommendations on dose, precautions, and contraindications, and determining the appropriate usage for the product. This is especially important in the case of drugs that are new or seldom used.

Appendix

Glossary Index

129 143

Multiple sclerosis, a disease with no known cure, begs many more questions than the scientific community can answer. Its origin are unknown, its effects as varied as they are frightening. Those of us living with MS have different ways of dealing with this illness. Our reactions range widely from barely acknowledging our vulnerability (denial), to turning it into a call to arms and our life's mission. (I must admit that I fall into this category.)

Dr. Sheremata's book, MS: 100 Q & A, attempts to answer the most commonly asked questions that people living with MS—MS survivors as I call us—have on either end of the spectrum. They include questions that I have asked and tried to answer along my MS journey. I have researched the illness on my own when I did not feel comfortable enough to share my fears with a white coat. It took me a while to find patient-friendly physicians who think that no question is too minute, no negative prognosis indisputable. Theirs are the voices I prefer to hear when I am having a particularly bad day and want an explanation about some new strange new symptom that has emerged, seemingly from nowhere.

I encourage MS survivors to find heath care partners who are not only advocates for the illness, but advocates for them. Numerous studies show that how a patient is diagnosed and his relationship with his health care providers influence his ability to manage illness. MS: 100 Q & A helps to fills the gap for MS survivors who were diagnosed without compassion or hope, and who don't have open partnerships with their health care professionals.

Dr. Sheremata adeptly balances his scientific knowledge of the disease and years of clinical practice with an inherent acknowledgment of its emotional impact on the patient. He subtly addresses our need to make sense of the inconceivable, offering responses that are thorough, concise and easily understood by laypeople. (Who needs to be ill and frightened, and feel too stupid to understand why our body is failing us at the same time? As if this disease does not offer enough sobering experiences on its own.)

Additionally, MS: 100 Q & A recognizes that all of us with MS have shadow patients: those family members, loved ones, friends and colleagues who live each day with some aspect of this illness, with some part of our new selves under the monster, as many of us call MS.

While written to an audience of MS survivors, MS: 100 Q & A can be an invaluable resource for those who live with us, love us, work with us, are part of our universe. It helps to explain the strange world of MS, to put the symptoms from the physical to the psychological into perspective, to give them context.

As MS continues to extend into "nontraditional" populations, including men, people of color and even children, I encourage physicians, especially those who are not neurologists by training, to read MS: 100 Q & A. There's no telling when someone will come through their doors with "nonspecific" symptoms and odd episodes, and will need to be referred elsewhere.

Montel B. Williams Founder, The Montel Williams MS Foundation, Host and Executive Producer, The Montel Williams Show

For most patients, living with multiple sclerosis can be frightening and often devastating. Unfortunately, there are many physicians who are so busy that they lose sight of what the patient is experiencing. Especially in this time of managed care, the average practitioner must increase the volume of patient visits in order to achieve adequate compensation for his long investment of studies, and the patient is left to flounder among often conflicting information without the guidance of a seasoned and caring health provider.

In our information age, people are bombarded with much chatter, often far beyond their ability to put it all together in a meaningful way and all too frequently alarming them to the worst possible outcomes. The field of neuroimmunology, the science behind MS and its treatment, is becoming constantly more complex. Even busy neurologists usually cannot be conversant with the burgeoning knowledge in this field. It thus falls to the academic super-specialist to bridge many branches of science in order to maintain understanding of advances as they occur.

Professor Sheremata has brought us, in this small volume, not only many years of ongoing study but also deep compassion and understanding for the experience of his patients, allowing a first hand view of what an ideal doctor-patient relationship should be. He has presented the concerns of his patients and demonstrates the actual interaction with them, bringing to bear his extensive experience as an MS expert and his knowledge of the latest achievements in this rapidly progressing field. He inspires confidence and reassurance that there is a light at the end of the tunnel and that his charges are not left without hope. He takes up the difficult task of giving clear and easily understandable explanations to the many questions brought to him. Thus, like the model for the caring physician, Maimonides, Dr. Sheremata has provided a fresh approach that will serve as a guide for the bewildered.

Gerard M. Lehrer, MD December 3,2005

Introduction

Multiple sclerosis (MS) is a recent illness in the history of mankind. Although before the latter part of the 19th century several people may have had MS, the first person afflicted with reasonable certainty was Sir Augustus d'Este, a grandson of King George III of England. He was born in 1794, 18 years after the American Declaration of Independence. It was through a detailed diary that Douglas Firth recognized the illness and subsequently published extracts from that diary in 1947 (Cambridge University Press). In the mid 19th century in Paris, Jean-Marie Charcot, the first professor of neurology, recognized the key manifestations of MS and the characteristic pathologic changes in the nervous system. In turn, Charcot attributed the recognition of the illness and tissue changes of MS to Cruveilhier, the renowned professor of anatomy. Sigmund Freud, at that time a student under Charcot, became interested in the emotional aspects of MS.

Regardless of whomever was the first patient affected or who originally described the illness, MS is a uniquely human disease. No comparable natural illness afflicts animals. Experimental models of MS that rely upon diseases in animals, such as experimental allergic encephalomyelitis (EAE), all fall short for many reasons. For the most part, the study of EAE has successfully provided information about immune responses that have been important to human illness, but the specific relevance of EAE to MS has been much more limited.

Important new insights have recently been achieved through the detailed examination of MS brain tissue. Many studies have confirmed Charcot's original ideas of a central role for myelin in MS. Myelin is a fat-laden tissue that surrounds nerve fibers, allowing them to conduct messages from one nerve cell to another at high speeds. Newer studies, using older and more reliable but more expensive techniques, have shown that extensive myelin damage is commonly present in MS but is often not seen in routine brain magnetic resonance imaging (MRI) scans. Other recent studies have refocused interest on the importance of nerve fiber damage and loss in MS in the development of disability. Additional information has come from studies of a newly recognized myelin protein (MOG) and the ability of immune reactions to this protein to produce monkey models of disease more closely resembling the human disease MS. There is hope that these new findings may result in a laboratory test that will help confirm the diagnosis at the onset of the illness. More importantly, these studies are providing new leads as to the cause of MS. Hopefully they will lead to new specific forms of immunotherapy.

The variety of symptoms and neurologic problems in MS can be bewildering for patients and physicians alike. Compounding this complexity is the emotional reaction of patients with MS to their symptoms. The difficulty in arriving at a diagnosis leads to frustration and anxiety for patients. This is also aggravated by fears (many times unrealistic) of imminent disability. The economic implications of the cost of testing and anticipated loss of income engender concern. The presence of anxiety in patients sometimes prompts them to place undue stress on certain symptoms, leading physicians to conclude that the problem is related to anxiety alone. In my experience, approximately two of three women ultimately found to have MS were initially diagnosed as being anxious, depressed, or "hysterical."

Many drugs, especially antidepressant and sedative drugs, may affect both symptoms of MS and neurologic functions. Over-the-counter drugs such as dolomite (lithium carbonate), for example, impact both emotional control and immune function. Unfounded claims for a host of substances in health food stores and mail-order sources are legion. The promised benefits may be lacking, but tox-icities of many products are real.

Answers to the question "what is MS?" will differ greatly depending on who is asking the question and who is answering. A physician has a perspective of MS that will depend on his or her education and clinical experience. The physician's view may include views of scientists who study the changes in normal anatomy and function of the human nervous system. Moreover, practicing physi cians may see the question differently when they are trained in general neurology. When trained in the subspecialty of MS, their insight may be quite different. The perspective of the physician trained in psychology or psychiatry may also differ markedly, but in the end, all these views are meaningful to the patient.

Patients often define the question "what is MS?" from their own particular concerns, which are in a different realm from those of health care professionals. These patients' concerns are often focused on specific issues, such as their perception that these symptoms represent a threat to their own physical independence. Their immediate worry is about outcomes of specific symptoms or limitations that they may already have. The perspectives of the patient and physician may intersect later. Often, when the informed patient has his or her original issues addressed, then he or she will have a better understanding of the scientific underpinnings of the illness and outcomes of research as they relate to treatment options.

Hopefully, the response to the question "What is MS?" in this book will be meaningful to readers. This question has been addressed from a number of different overlapping perspectives asked by a variety of patients with different educational backgrounds and disease manifestations. Dozens of patients have been asked what their most important question about MS was and what they thought the answer should address. An effort was made to address the specific question they were asking. Many patients were college graduates, whereas others had not graduated from high school. Nevertheless, their questions and concerns were similar. The question "What is Multiple Sclerosis?" was asked by almost two thirds of the patients who submitted their questions for this book.

William A. Sheremata, MD, FRCPC, FACP

Dedication

This book, 100 Questions & Answers About Multiple Sclerosis, is dedicated to the many patients who submitted their questions that I have attempted to answer, as well as the many others whom I have served for more than three decades. The questions used in the book were actual questions that patients and their families asked. Many patients asked the same questions, sometimes using different words and from different perspectives. The answers are organized pretty much in the same fashion as the other books in the 100 Questions & Answers series.

The influence of two people on my career must be acknowledged. The first is Norman Geschwind, MD, who was the Putnam Professor of Neurology at Harvard. This "Renaissance man" stimulated me to pursue laboratory research in neuroimmunology as well as clinical training in neurology at the Boston VAH and Boston City Hospitals. The second is James Bertrand Cosgrove, MD, at the Montreal Neurological Institute, who, despite my protests, patiently cultivated my clinical skills and broadened my knowledge of multiple sclerosis.

I am indebted to Karen Miller for her enthusiastic response to my invitation to review, reflect, and comment on the content of this book. Over the last eight years I have gotten to know and respect Karen and her husband David through interactions in our MS Center. Karen is an exceptionally intelligent, altruistic, and caring woman. With the help of her family she has accepted her diagnosis and adjusted her life in response to MS, interrupting her flourishing and gifted legal career to focus on MS. She participated in a Phase II study of Tysabri and became an enthusiastic proponent for the treatment based on her personal experience. Throughout the last eight years she has been fortunate to have a supportive family.

The indulgence, patience, and assistance of my family in completing this book is acknowledged and is deeply appreciated.

William A. Sheremata, MD, FRCPC, FACP

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PART ONE

The Basics

What is multiple sclerosis?

Where does MS occur in the nervous system?

What is a lesion?

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