Janet M. Cogoli - The Other Side: Living with Multiple Sclerosis

THE OTHER SIDE

LIVING WITH MULTIPLE SCLEROSIS

Janet M. Cogoli, M.D.

AuthorHouse

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Bloomington, IN 47403

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2011 Janet M. Cogoli, M.D.. All rights reserved.

No part of this book may be reproduced, stored in a retrieval system, or transmitted by any means without the written permission of the author.

First published by AuthorHouse 07/14/2011

ISBN: 978-1-4634-0808-4 (sc)

ISBN: 978-1-4634-0809-1 (ebk)

Li brary of Congress Control Number: 2011908711

Printed in the United States of America

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DEDICATION

This book is for my deceased parents,

Shirley Rose (Ledoux) Cogoli and

William Joseph Cogoli.

To them, I owe all good things in life.

To my deceased brother,

William Edward Cogoli,

who spoke my language, was my adventurous partner,

and always reminded me of lifes realities.

To my many doctors, teachers, and professors,

who have always tried their best.

To my CNAs,

who have been with me in both good times and bad

and have helped me in so many ways.

To all of the MS patients whom I have met in my practice and to the many others with MS nationwide, as well as their families.

My love to you all:

Without your presence, I could not have enjoyed life as I have.

Contents

Preface

This is an account of my private and professional experience with multiple sclerosis. It has been thirty years since I was diagnosed. I am a physician and a patient. I have studied it, treated it, suffered with it, and now I would like to empathize with others also affected by this disease. I hope that this book will improve understanding by other professionals. I will be writing this as an autobiography, though I acknowledge that everyone has his or her own unique, important story.

I am a physiatrist (physical medicine and rehabilitation), not a neurologist, and do not mean this to be a textbook. So, some of the information herein has not been researched extensively nor written with this in mind. Please critique it kindly.

My specialty deals with helping people reach their maximum functional potential, despite physical disability. There are a number of professionals involved in the rehabilitation process, including physical therapists, occupational therapists, speech therapists, social workers, rehab nurses, and neuropsychologists. Doctors such as orthopedic surgeons, internists, and urologists are also team members.

The physiatrist is an M.D. or a D.O. who coordinates the patients care with the therapists roles. The physiatrist must be familiar with the medical and social needs of the patient. Since negotiation with insurance companies is usually necessary, the physiatrist must also be the patients advocate.

Please enjoy and think of this book as a friendly conversation between you and me. It is written for you, your family, and interested others. Again, this is not a textbook; there are many good ones already published.

The book begins with a definition of multiple sclerosis, and then a section on neuroanatomy follows. The neuroanatomy has been simplified in order to be easily understood. It should help with the explanations of multiple sclerosis symptoms.

The next part will be a history detailing the lives of my grandfather and my parents. I hope that you find this interesting and of value. These people have given me inspiration, courage, and hope. Then Ill describe my personal history and the problems Ive had with multiple sclerosis.

In the contents, Ill address some of the more common symptoms and give explanations for their occurrence, as well as the ways of dealing with them that have been successful for others and me.

This section will also include both medicines that are currently in use and others being investigated.

Definition of
Multiple Sclerosis

Multiple Sclerosis (MS, hereafter used interchangeably) is an autoimmune disease affecting the central nervous system (CNS). Autoimmune is a term that refers to antibodies produced against the host itself, and while it has been proven that the autoimmune system is involved, exactly how is not yet known. Attempts to find an infectious agent that might be involvedalas, they have failed. In fact, there is still too much about multiple sclerosis which is not yet understood, but we do know that it is not contagious, is more common in women than men, and is also more common in people who live north of the equator. It may be inherited and at this time much genetic research is being done. There might also be an environmental factor involved.

In the United States, multiple sclerosis has an incidence of 400,000, with 200 new diagnoses made each week. The total number of cases in the world is about 2.5 million. MS is known to occur in all age groups, from young children to the elderly.

Myelin is the very important structure that will be addressed throughout this book. It is a coating on the nerves of the CNS which acts like insulation on electrical wires. It permits rapid, efficient signal transmission through the nerves, which, in turn, results in smooth, coordinated movement. This is accomplished involuntarily and is often taken for granted. Breaks in the insulation or areas of demyelination result in interrupted signal transmission and in the many symptoms seen in multiple sclerosis.

It is also worth mentioning the four different courses that are seen in multiple sclerosis. The benign course consists of a remitting pattern, with very long periods of stability. The relapsing-remitting course usually involves many periodic attacks, followed by remissions (recovery). This results in slow but steadily progressive disability. This is also called secondary progressive. The chronic-progressive course , usually seen in older people, consists of steady progression without remission and resultant severe disability. Finally, for those few with a malignant course , total disability and death occur within months.

Neuroanatomy

The CNS consists of the brain , or better referred to as the cerebrum , which is the major control center for thought, movement, and sensation. Behind the brain is the cerebellum , responsible for coordinating movements of the extremities, and also for balanceespecially, but not onlywith walking. The brainstem is beneath the cerebrum and the cerebellum and is responsible for controlling vital functions such as the heart, lungs, and also eye movement.

Beneath all of these is the spinal cord , which is like a huge telephone pole, insulated by myelin. It functions by quickly and efficiently transmitting signals from the brain to and from the body below.

Then we have the nervous system, located in the extremities, known as the peripheral nervous system , or PNS. The extremities may be affected by weakness or other symptoms in multiple sclerosis not because of problems in the PNS itself but because of problems in the brain or spinal cord, resulting in interrupted signal transmission.

Finally, there is the autonomic nervous system , which automatically controls the bowel, heart rate, and other necessary functions on its own. It indirectly communicates with the CNS.