Multiple Sclerosis: the History of a Disease Murray 00 11/10/04 10:58 AM Page Ii Murray 00 11/10/04 10:58 AM Page Iii
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This page intentionally left blank Murray 00 11/10/04 10:58 AM Page i Multiple Sclerosis: The History of a Disease Murray 00 11/10/04 10:58 AM Page ii Murray 00 11/10/04 10:58 AM Page iii Multiple Sclerosis: The History of a Disease T. Jock Murray OC, MD, FRCPC, FAAN, MACP, FRCP, LLD, DSc, D. Litt Professor of Medical Humanities Director, Dalhousie MS Research Unit New York Murray 00 11/10/04 10:58 AM Page iv Demos Medical Publishing, 386 Park Avenue South, New York, NY 10016 www.demosmedpub.com © 2005 by Demos Medical Publishing. All rights reserved. This book is protected by 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 Murray, T. J. The history of multiple sclerosis / T. Jock Murray. p. ; cm. Includes bibliographical references and index. ISBN 1-888799-80-3 (softcover : alk. paper) 1. Multiple sclerosis—History. [DNLM: 1. Multiple Sclerosis—history. WL 11.1 M984h 2005] I. Title. RC377.M88 2005 616.8'34—dc22 2004022222 Murray 00 11/10/04 10:58 AM Page v To Janet Murray 00 11/10/04 10:58 AM Page vi Murray 00 11/10/04 10:58 AM Page vii Contents Acknowledgments . ix Foreword by Professor W.I. McDonald . xi CHAPTER 1: Terminology and Disease Description. 1 CHAPTER 2: The Framing of Multiple Sclerosis. 13 CHAPTER 3: The Palsy without a Name: Suffering with Paraplegia 1395–1868 . 19 CHAPTER 4: The Steps Toward a Discovery: The Early Medical Reports . 61 CHAPTER 5: The Building Blocks of a Discovery. 95 CHAPTER 6: The Contribution of J.M. Charcot—1868 . 103 CHAPTER 7: The Medical Reports After Charcot . 139 CHAPTER 8: Clarifying the Pathology: James Dawson . 189 CHAPTER 9: The Journal of a Disappointed Man . 195 CHAPTER 10: Experimentation, Meetings, Reviews, and Symposia, 1920–1960. 203 CHAPTER 11: Searching for a Cause of MS . 229 CHAPTER 12: Classifying and Measuring MS . 319 CHAPTER 13: The Nature of the MS Plaque. 337 CHAPTER 14: Investigations. 363 CHAPTER 15: Searching for Therapy . 391 vii Murray 00 11/10/04 10:58 AM Page viii viii | Multiple Sclerosis: The History of a Disease CHAPTER 16: Multiple Sclerosis and the Public: Societies, Narratives, and the Media . 505 Afterword. 529 A Chronology of Events in the History of MS. 535 Index . 549 Murray 00 11/10/04 10:58 AM Page ix Acknowledgments am indebted to many people for their assistance and inspiration in this Iwork. My wife Janet Murray assisted with library searches and refer- encing at the Wellcome Institute for the History of Medicine, and with all my work is a generous, wise, and understanding critic. Dalhousie University, the Department of Medicine, and my colleagues in the Division of Neurology and the Medical Humanities Program were sup- portive of my sabbatical leave. My tireless and efficient assistant Roxy Pelham suffered through many drafts and was able to guide me through the complexities of organ- izing the manuscript. I am grateful to the Burrows-Wellcome Foundation for a grant in 1998 to work at the Wellcome Institute for the History and Understanding of Medicine, and to Berlex Canada for an unrestricted education, grant to complete the research and writing at the Wellcome Library in 2000. For one period of writing during a six-month sabbatical in 2000, Janet and I had the luxury of writing and walking the beach at the summer home of Dr. Barrie and Martha Silverman on Sullivan’s Island, South Carolina. I relied heavily on the excellent historical work of my colleagues Alastair Compston, George Ebers, and W. Ian McDonald, each of whom has advanced the understanding of MS in so many ways over the last four decades. Dr. Andrea Rideout assisted with library searches when working with me as an elective student when I was beginning this project a decade ix Murray 00 11/10/04 10:58 AM Page x x | Multiple Sclerosis: The History of a Disease ago. Susan Drain of Mount Saint Vincent University introduced me to the case of Margaret Gatty, Maria Aguayo to William Brown, David Shephard to Will Coffin, Nick LaRocca to Alan Stevenson, and Heather Spears to Margaret Davies. I have benefited from the helpful staff and the resources of the Wellcome Institute for the History and Understanding of Medicine, The Kellogg Library for the Health Sciences at Dalhousie, the British Library, the National Archives of Canada, the National Hospital, Queen Square, the Harveian Library of the Royal College of Physicians of London, the New York City Library, and the Waring Library of the Medical University of South Carolina. I particularly acknowledge John Simonds of the Wellcome Library, who helped me date the atlases of Carswell and Cruveilhier; Dr. Leslie Hall, who introduced me to the papers of Frederick Parkes Weber, and Professor W. Ian McDonald, who assisted me in viewing all the correspondence and the diaries related to Augustus d’Esté. Dr. David Hopkins assisted in verifying the name of the physician Godfreid “Zonderdank” de la Haye. Dr. Hans K. Uhthoff, Emeritus Professor of Surgery at the University of Ottawa, kindly provided photo- graphs of his great uncle, Wilhelm Uhthoff. I am grateful to Jack S. Burks and Kenneth P. Johnson, editors of Multiple Sclerosis: Diagnosis, Medical Management, and Rehabilitation and to Demos Medical Publishing Inc. for allowing me to include material from my chapter in that book, Chapter I: The History of Multiple Sclerosis, which was expanded into this quite different history. A special thanks to my friends Professor W. Ian McDonald of London, Donald Paty of Vancouver, and George Ebers of Oxford, who were kind enough to read a very rough first draft of the manuscript and offer comments and advice. I am also honored to have Professor W. Ian McDonald, Harveian Librarian at the Royal College of Physicians of London, write the Foreword. He has contributed to all aspects of multiple sclerosis research in his outstanding career at the Institute of Neurology and the National Hospital, Queen Square, and has always been a kind and supportive friend to me and so many others who work for the cause of MS patients. Murray 00 11/10/04 10:58 AM Page xi Foreword he social and professional histories of multiple sclerosis are rich in Ttheir sources and their detail. Dr. Murray, in this scholarly but at the same time engaging book, brings together a mass of material, some not easily accessible otherwise. His range is wide. He gives a balanced assessment of the claims for the existence of multiple sclerosis in historical figures and of the accounts of sufferers from MS who have written of their experiences. He charts the evolution of our knowledge of the nature of multiple sclerosis, of the factors involved in its causation, how it affects the nervous system, and of the changing strategies for treatment. This book is a mine of information. People with multiple sclerosis, physicians, nurses, physiotherapists, and others involved in the care of patients, as well as historians interested in the social context of disease, will be greatly in Dr. Murray’s debt. W. Ian McDonald Harveian Librarian Royal College of Physicians, London xi Murray 00 11/10/04 10:58 AM Page xii Murray 01 11/10/04 11:03 AM Page 1 Chapter 1 Terminology and Disease Description “The story of knowledge of multiple sclerosis is like a history of med- icine in miniature.” Tracy J. Putnam, 19381 n earlier centuries, there were people in every community who had Isymptoms of a slowly increasing paralysis, with episodes of numbness, dizziness, blurred vision, and decreasing ability to get around. They eventually walked with canes and later were unable to walk unassisted. This process often took many years, usually decades. Such people were said to be ill, but with a palsy, or a paralysis. By the 18th century, they were classified by their physicians into broader groups such as rheumatic disease, a constitutional weakness, or a paraplegia. By the late 18th century, the term paraplegia was used for all people who had a progressive paralysis. Physicians divided the condition into active or passive, functional or organic. A separate group was recognized due to “the pox,” syphilis, which could affect the central nervous system (CNS) in many ways. By the beginning of the 19th century, pathological studies were beginning to show differences in the appearance of some of these 1 Murray 01 11/10/04 11:03 AM Page 2 2 | Multiple Sclerosis: The History of a Disease cases when examined by the naked eye and the feel of the brain and spinal cord under the fingertips. Robley Dunglison, a Scottish physician and anatomist recruited to the new medical school at the University of Virginia at age 26 by Thomas Jefferson, divided all such cases into paraplegia if there was weakness, and paraplexia if the paralysis was complete.2 Later, as forms of neurological disease were being separated, the patient with intermittent and progres- sive neurological symptoms might be grouped with patients diagnosed as having paraplegia, or inflammation of the nervous system, but might also be included among patients with general paralysis or tabes dorsalis due to syphilis. In 1824, a young man in France named Charles Prosper Ollivier d’Angers published, at age 28, a remarkable 400-page book on disorders of the spinal cord that helped make some sense out of the various condi- tions that caused paraplegia.