Guillain-Barre Syndrome: From Diagnosis to Recovery (American Academy of Neurology)

281 Pages·2007·0.89 MB·English

by  M.D. Gareth John Parry

Guillain-Barré
Syndrome
AMERICAN ACADEMY OF NEUROLOGY (AAN)
Quality of Life Guides
Lisa M. Shulman, MD
Series Editor
Alzheimer’s Disease
Paul Dash, MD and Nicole Villemarette-Pittman, PhD
Amyotrophic Lateral Sclerosis
Robert G. Miller, MD, Deborah Gelinas, MD,
and Patricia O’Connor, RN
Epilepsy
Ilo E. Leppik, MD
Guillain-Barré Syndrome
Gareth John Parry, MB, ChB, FRACP and Joel Steinberg, MD, PhD
Migraine and Other Headaches
William B. Young, MD and Stephen D. Silberstein, MD
Peripheral Neuropathy
Norman Latov, MD
Restless Legs Syndrome
Mark J. Buchfuhrer, MD, Wayne A. Hening, MD, PhD,
and Clete Kushida, MD, PhD
Stroke
Louis R. Caplan, MD
Understanding Pain
Harry J. Gould, III, MD, PhD
Guillain-Barré
Syndrome
From Diagnosis to Recovery
GARETH J. PARRY, MB, CHB, FRACP
Department of Neurology
University of Minnesota Medical School
Minneapolis, Minnesota
JOEL S. STEINBERG, MD, PHD
Department of Medicine
Drexel University College of Medicine
and
GBS/CIDP Foundation International
Narberth, Pennsylvania
LISA M. SHULMAN, MD
Series Editor
Associate Professor of Neurology
Rosalyn Newman Distinguished Scholar in Parkinson’s Disease
Co-Director, Maryland Parkinson’s Disease
and Movement Disorders Center
University of Maryland School of Medicine
Baltimore, Maryland
New York
© 2007 by AAN Enterprises, Inc. 1080 Montreal Avenue, Saint Paul, MN 55116. All rights
reserved. This book is protected by copyright. No part of it may be reproduced, stored in a
retrieval system, or transmitted in any form or by any means, electronic, mechanical, photo-
copying, recording, or otherwise, without prior written permission.
Library of Congress Cataloging-in-Publication Data
Parry, Gareth J.
Guillain-Barré syndrome : from diagnosis to recovery / Gareth J. Parry, Joel S. Steinberg.
p. cm. — (American Academy of Neurology (AAN) quality of life guides)
Includes bibliographical references and index.
ISBN-13: 978-1-932603-56-9 (pbk. : alk. paper)
ISBN-10: 1-932603-56-5 (pbk. : alk. paper)
1. Guillain-Barré syndrome. I. Steinberg, Joel S. II. Title.
RC416.P37 2007
616.8'56—dc22
2006030462
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Contents
About the AAN Press Quality of Life Guides. . . . . . . . . . . . . vii
Foreword. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ix
Preface. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . xi
Acknowledgments. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . xiii
CHAPTER 1
What Is Guillain-Barré Syndrome? . . . . . . . . . . . . . . . . . . . . 1
CHAPTER 2
What Are the Effects of Guillain-Barré Syndrome? . . . . . . . . 9
CHAPTER 3
How Is Guillain-Barré Syndrome Diagnosed?. . . . . . . . . . . . 39
CHAPTER 4
What Causes Guillain-Barré Syndrome?. . . . . . . . . . . . . . . . 53
CHAPTER 5
Supportive Treatments in the Acute Care Hospital. . . . . . . . 65
CHAPTER 6
Rehabilitation and Coming Home . . . . . . . . . . . . . . . . . . . 109
CHAPTER 7
Immunotherapy Treatment . . . . . . . . . . . . . . . . . . . . . . . . . 147
CHAPTER 8
Life After Guillain-Barré Syndrome . . . . . . . . . . . . . . . . . . 155
v
Contents
CHAPTER 9
Chronic Immune-Mediated Polyneuropathies . . . . . . . . . . 195
Glossary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 219
Resources. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 241
Index . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 251
vi
About the AAN Press
Quality of Life Guides
IN THE SPIRIT OF THE DOCTOR-PATIENT PARTNERSHIP
T
HE BETTER-INFORMED PATIENT is often able to play a vital role in his or
her own care. This is especially the case with neurologic disorders,
for which effective management of disease can be promoted—indeed,
enhanced—through patient education and involvement.
In the spirit of the partnership-in-care between physicians and
patients, the American Academy of Neurology Press is pleased to produce
a series of “Quality of Life” guides on an array of diseases and ailments
that affect the brain and central nervous system. The series, produced in
partnership with Demos Medical Publishing, answers a number of basic
and important questions faced by patients and their families.
Additionally, the authors, most of whom are physicians and all of
whom are experts in the areas in which they write, provide a detailed
discussion of the disorder, its causes, and the course it may follow. You
also find strategies for coping with the disorder and handling a number
of nonmedical issues.
The result: As a reader, you will be able to develop a framework for
understanding the disease and become better prepared to manage the
life changes associated with it.
ABOUT THE AMERICAN ACADEMY OF NEUROLOGY (AAN)
The American Academy of Neurology is the premier organization for
neurologists worldwide. In addition to support of educational and scien-
tific advances, the AAN—along with its sister organization, the AAN
Foundation—is a strong advocate of public education and a leading sup-
porter of research for breakthroughs in neurologic patient care.
vii
About the AAN Press Quality of Life Guides
More information on the activities of the AAN is available on our
website, www.aan.com. For a better understanding of common disorders
of the brain, as well as to learn about people living with these disorders,
please turn to the AAN Foundation’s website, www.thebrainmatters.org.
ABOUT NEUROLOGY AND NEUROLOGISTS
Neurology is the medical specialty associated with disorders of the brain
and central nervous system. Neurologists are medical doctors with spe-
cialized training in the diagnosis, treatment, and management of
patients suffering from neurologic disease.
Lisa M. Shulman, MD
Series Editor
AAN Press Quality of Life Guides
viii
Foreword
G
UILLAIN-BARRÉ SYNDROME (GBS) is a rare disease by any standard,
affecting about 2 in 100,000 people per year worldwide. Yet, it is now
the most common cause of acute flaccid paralysis worldwide since the
near-demise of polio. Neurologists have been fascinated by this disease of
the peripheral nervous system since the two most cited papers; Landry in
1859 and later Guillain, Barré, and Strohl in 1916. Interest in GBS accel-
erated following the seminal paper of Asbury, Arnason, and Adams in
1969 showing that GBS was an immune-mediated disorder. Animal mod-
els were developed, and the science was off and running. Treatment of the
human disease received a large boost with the trials of plasmapheresis in
the 1980s which showed benefit compared to standard supportive treat-
ment. In the 1990s, intravenous immunoglobulin was shown equivalent
to plasmapheresis which is now the standard treatment in those places
where it is available. While neurologists were concentrating on the acute
phase of the disease and physiatrists on the early rehabilitation phase,
patients were left to deal with GBS for the rest of their lives. Into that void
stepped Estelle Benson, the wife of Robert who had developed GBS.
Virtually single-handed, she created what is now a global patient-oriented
group, the GBS/CIDP Foundation International (www.gbsfi.com). The
foundation is a patient support group for individuals and their families
with GBS and the related condition chronic inflammatory demyelinating
polyneuropathy (CIDP). Early in that effort, she and Dr. Joel Steinberg, a
physician who had GBS, realized that no book directly targeted patients
with GBS and their families. In 1983 Joel wrote, Guillain-Barré Syndrome:
An Overview for the Layperson. At about the same time, scientific informa-
tion on GBS was accelerating but again, no single source was available.
Then, three medical books on GBS were published at about the same time.
Guillain-Barré Syndrome by Richard A.C. Hughes (1990), Guillain-Barré
Syndrome by Allan Ropper, Eelco F.M. Wijdicks, and Bradley T. Truax
(1991), and Guillain-BarréSyndromeby Gareth J. Parry (1993).
ix