Multiple Sclerosis from Both Sides of the Desk: Two Views of Ms Through One Set of Eyes

By Vincent F. Macaluso MD

“Dr. Macaluso has written the Iliad and the Odyssey of multiple sclerosis while playing the part of Odysseus. Amazing!”
Carlo Tornatore, MD, Vice Chairman, Department of Neurology
Georgetown University Hospital, Washington, DC

Vincent F. Macaluso was in medical school when he got the news: he had multiple sclerosis.

He soon learned that almost a half million people in the United States have multiple sclerosis—and millions more worldwide. Many have obvious symptoms, such as trouble with walking, balance, and coordination, but the most insidious aspect of the disease is how it affects the mind.

Macaluso shares insights from his vantage point as a doctor and an MS patient, helping his peers understand symptoms they may not grasp and offering wisdom for those who live with the disease. Learn how to

• anticipate and overcome problems concentrating;
• manage swirling emotions;
• understand MS from a neurological standpoint;
• preserve and continue to enjoy an active sex life; and
• prevent the disease from ruining family life.

Laced with humor and filled with diagrams and the author’s own recollections about how he’s kept MS from controlling his life, this account is essential reading for doctors, patients, and anyone who has an MSer in his or her life.

• Language: English
• Publisher: iUniverse
• Release date: Jun 2, 2015
• ISBN: 9781491757475

Vincent F. Macaluso MD

Vincent F. Macaluso, MD, is a neurologist who specializes in multiple sclerosis, practicing in New Hyde Park, New York. After completing his undergraduate degree in neurobiology and behavior at Cornell University, he attended Georgetown University School of Medicine. He and his wife, Lauren, have two children, Abigail and Vincent. Visit his website at www.macalusomedical.com.

Book preview

Copyright © 2015 Vincent F. Macaluso, MD

All rights reserved. No part of this book may be used or reproduced by any means, graphic, electronic, or mechanical, including photocopying, recording, taping or by any information storage retrieval system without the written permission of the publisher except in the case of brief quotations embodied in critical articles and reviews.

The information, ideas, and suggestions in this book are not intended as a substitute for professional medical advice. Before following any suggestions contained in this book, you should consult your personal physician. Neither the author nor the publisher shall be liable or responsible for any loss or damage allegedly arising as a consequence of your use or application of any information or suggestions in this book.

iUniverse

1663 Liberty Drive

Bloomington, IN 47403

www.iuniverse.com

1-800-Authors (1-800-288-4677)

Because of the dynamic nature of the Internet, any web addresses or links contained in this book may have changed since publication and may no longer be valid. The views expressed in this work are solely those of the author and do not necessarily reflect the views of the publisher, and the publisher hereby disclaims any responsibility for them.

Any people depicted in stock imagery provided by Thinkstock are models, and such images are being used for illustrative purposes only.

Certain stock imagery © Thinkstock.

ISBN: 978-1-4917-5745-1 (sc)

ISBN: 978-1-4917-5746-8 (hc)

ISBN: 978-1-4917-5747-5 (e)

Library of Congress Control Number: 2015900137

iUniverse rev. date: 7/08/2015

Contents

FIRST

MY HOUSE IS YOUR HOUSE

SECOND

WHAT MS IS FROM A NEUROLOGICAL POINT OF VIEW

The Central Nervous System

The Immune System

Now, Let’s Put These Two Ideas Together

Conclusion

THIRD

A Day and a Night in an MS Life

FOURTH

IMMUNE SYSTEMS FROM A NEUROLOGICAL POINT OF VIEW

Immune Systems

Genetics and the Environment

Getting Back to the Immune System

FIFTH

With or without You

SIXTH

THE NEUROLOGICAL EXAMINATION FROM A NEUROLOGICAL POINT OF VIEW

Neurology

The Neurological Exam

Beautiful N.

SEVENTH

Neurological Exam in the Round

Mike Goes to the Doctor

EIGHTH

MRIS AND MS FROM A NEUROLOGICAL POINT OF VIEW

How MRI Machines Work

The Conservation of Mass and Energy

Now for How the Pictures Get Made

Gadolinium

What Goes On When You Get an MRI

NINTH

Mind, Meet Brain

TENTH

WHAT MRIS LOOK LIKE FROM A NEUROLOGICAL POINT OF VIEW

MRI Images

How MRI Images of the Brain Are Presented

What You Are Looking At

MRI Is Great but Not Perfect—Yet

ELEVENTH

What I Heard the Doctor Say

TWELFTH

NEUROCOGNITIVE TESTING FROM A NEUROLOGICAL POINT OF VIEW

An Example of Common Cognition

An Example of MS Cognition

Computer-Based Neurocognitive Testing

Here’s the Liberating Part for MSers

Here’s the Liberating Part for Doctors

Looking at the Ones Who Love Us and Ourselves

Thinking of Others—The Ones Who Get Scared

THIRTEENTH

Imagined—Wished—Possible

FOURTEENTH

THE MS THERAPIES FROM A NEUROLOGICAL POINT OF VIEW

The Journey of the White Blood Cell

The Platform Therapies

The Second-Generation Therapies

FIFTEENTH

My Life with You

SIXTEENTH

THE MS ICE FROM BOTH SIDES OF THE DESK

Part I

Development and Functioning of the Nervous System

Functioning of Nerves

The Key Points to Remember Are:

Part II

A New Idea of What Is Going On in the Minds of MSers

Understanding MS Symptoms

1. Initiative

2. Concentration

3. Emotional Lability

4. Coital Activity

5. Urinary Control

6. BEhavior

Part III

How We Can Melt the MS ICE

SEVENTEENTH

SEX FROM A NEUROLOGICAL POINT OF VIEW

The Sexual Response Cycle

Excitement and Plateau

Orgasm

Resolution

Medications That Might Cause Sexual Problems

EIGHTEENTH

A LOVE LETTER

NINETEENTH

HOW STEPHEN COLBERT HAS HELPED ME TO UNDERSTAND MS BETTER

TWENTIETH

FAMILY AND MS FROM A NEUROLOGICAL POINT OF VIEW

TWENTY-FIRST

What It’s Like Living with a Husband with MS

Having a Father with MS

My Dad

My Family and MS

The Here and Now

EPILOGUE

THE BREAKUP

Table of Figures

Figure 1. The CNS.

Figure 2. Diagram of the neuron.

Figure 3. A nerve is like a computer with an external modem.

Figure 4. Neurotransmitters are like the Internet.

Figure 5. Artist’s rendition of how the immune system works.

Figure 6. Artist’s rendition of what happens when the immune system starts to attack the myelin around the axon of a nerve.

Figure 7. The geographic distribution of MS around the world.

Figure 8. Neurology reflex hammer.

Figure 9. Finger-to-nose testing.

Figure 10. Heel-to-shin testing.

Figure 11. Correct way to test graphesthesia.

Figure 12. Incorrect way to test graphesthesia.

Figure 13. Bar magnet and lines of flux.

Figure 14. Protons lined up.

Figure 15. Energy pulse hits protons.

Figure 16. Protons return energy.

Figure 17. Different MRI sequences.

Figure 18. Brain MRI with labels.

Figure 20. Blood vessels containing gadolinium.

Figure 19. Enhancing MS lesion.

Figure 21. Sagittal brain MRI image.

Figure 22. Axial brain MRI image.

Figure 23. Coronal brain MRI image.

Figure 24. Labeled parts of the brain on sagittal and axial images.

Figure 25. Atrophy.

Figure 26. The normal immune system.

Figure 27. The immune system in MS.

Figure 28. The immune system in MS with β-interferon.

Figure 29. Cross-section through skin comparing intramuscular and subcutaneous injections. Glatiramer acetate is not a β-interferon but was included in this figure since it is given by subcutaneous injection.

Figure 30. The immune system in MS with natalizumab.

Figure 31. The immune system in MS with fingolimod.

Figure 32. Formation of the central nervous system and timing of myelination.

Figure 33. How an action potential is propagated along a nerve.

Figure 34. The MS ICE.

List of Tables

Table 1. Autoimmune diseases and the tissues that they affect.

Table 2. Function and testing of cranial nerves I–V.

Table 3. Function and testing of cranial nerves VI–XII.

Table 4. Motor system grading.

Table 5. Reflex grading.

Table 6. List of structures and functions of the brain (1 of 3).

Table 7. List of structures and functions of the brain (2 of 3).

Table 8. List of structures and functions of the brain (3 of 3).

Table 9. Therapies available to slow down the course of multiple sclerosis.

Table 10. Studies and primary endpoints for natalizumab and fingolimod.

Table 11. Common medications for depression.

Table 12. Common medications for attention deficit disorder.

To my son, Vincent, for helping me to become a better man.

To my daughter, Abigail, for appreciating the remarks I make under my breath.

And to my wife, Lauren, for being the singularity of goodness that holds my world together.

002Jobsquote.jpg

Foreword

From 1981 to 1994, I split my time practicing adult outpatient psychiatry at Georgetown and serving as associate dean for students at the med school. The latter had me overseeing the academic and psychological well-being of the med students.

Products of a rigorous admissions process, the med students were collectively bright, enthusiastic, hardworking, and generous. Individually, they were a wondrous bazaar of personalities, talents, and interests. Academic or disciplinary problems were rare. Problems, if they arose, were generally of a personal or emotional nature. They were a delight to work with.

In the course of time, one young man appeared on the scene, Vincent Macaluso, articulate and witty (no surprise when I found out he was a New Yorker, a graduate of Regis, the scholarship Jesuit prep school), interested in almost everything but specifically in editing the school newspaper. Over time, we became friends. When his diagnosis of multiple sclerosis came, he shared it, and subsequently we shared his adventures navigating the rocks and shoals of the clinical years and neurology residency. He introduced me to Lauren, and they invited me to be the priest at their wedding. The years rolled by. I’ve marveled at his courage, patience, and perseverance, and I’ve rejoiced in his progress, personal (great kids!) and professional.

And here is his book, Vince sharing himself in his many roles: physician, scholar, patient, husband, father, friend, comedian, teacher, healer.

A careful reader might note that although Vince lists religion as one of the major influences in his life, his text has no explicit mention of God or church. But the book is one man’s story of love received and love shared: parental love, years of patient study utilizing the brain and talents God gave him, meeting challenges and overcoming obstacles, keeping a happy, joyful spirit, and building a generous, competent, compassionate care for others. Jesuit education aims to educate men and women for others—students who develop the gifts God gives them and who, in gratitude, spend them generously in the service of others. Love and gratitude are shown not just in words but in actions: Vince’s life and Vince’s book show them both.

Our Italian friends would term this book an abbondanza, a grand feast of scientific knowledge and practical wisdom, a buffet cavalcade of experiences and emotions. Fasten your seat belt: sample, savor, chew, learn, laugh, enjoy, and give thanks.

Jon J. O’Brien, SJ, DO

Georgetown University

Washington, DC 20057

Preface

I have had MS since 1987 but was diagnosed in 1991 between my first and second years of medical school. As I went through med school and residency and became a husband and father, MS always played a part in my life. I knew I wanted to write a book about MS, but I didn’t know if I had anything new to contribute to the many books available on the subject. While I had my personal experiences and had thoroughly learned about the disease during my medical training and practice, I still didn’t know how to put it all together. If I undertook the project of writing a book about MS, I wanted it to have a unique purpose. There are some tremendous medical texts out there handling what many doctors believe to be the main troubles affecting those of us with MS. I respect and laud them for their thorough work. Likewise, there are some excellent stories about how individuals have dealt with the challenges that MS has presented to them. I cheer all people who are proactive in dealing with the significant challenges that life offers. I wanted my literary contribution in the MS world to be a synthesis of my medical and MS lives. Fortunately, I had some experiences that helped me to define my task.

In 2007, I was asked to speak at the national sales meeting for Biogen Idec—the company that makes the drug that I currently use to treat my multiple sclerosis. I made an impression at the meeting not only with the words I said but also in the way I said them. For the most part, people think that we physicians are boring people. So do I. When we get up in front of a group of people and start talking, we can forget that our audiences have not spent the majority of their lives developing intimate relationships with textbooks. Much of a doctor’s life is a solitary one. Our lives are spent learning from books, cadavers, slides, a few teachers, each other, and eventually from patients. We are, quite often, socially challenged.

I sat through thousands of hours of medical lectures where an expert doctor would take an interesting topic and then surreptitiously suck the life out of both the topic and the students. The lecturer would do this by using a combination of a monotone voice, an unintelligible accent, confusing slides, and absolutely no sign of any organizational scheme that we could use to remember the material. On a number of occasions, I seriously thought about stabbing myself in the eye with a pencil so I could have some sort of meaningful, sensate experience before I died from boredom. It was then that I swore to myself that if I ever got the chance to teach anybody about anything, I would make sure that I would

1. remain a cognizant, feeling human;

2. simplify any and all concepts to the simplest level; and

3. maintain the audience’s interest.

Because of this promise and my love of good stand-up comedy, I always infuse my shows with plenty of humor, pictures, data, movies, some sarcasm, and plenty of eye contact. My shows are educational, funny, and inspirational. This, I feel, is the essence of teaching.

At the sales meeting, the woman running the program asked how I would like to be introduced. I told her that I would like to show a rap video that my family and I had made. (Okay. I made my family make a rap video. It was the end of a long weekend where we had been trapped indoors because of bad weather. Tensions were running high. My wife and I were considering whether or not we still really needed both of the kids. So I set up the video camera and hung up a sheet as a backdrop, and we each took turns singing the words to a rap that I had made up about multiple sclerosis. After I shot all the footage, I set the whole thing to a beat and edited it on my Mac.) It was a nice thirty-second piece that I hoped would get the crowd going. After the video was played, I had the audio guys blast Back in Black by AC/DC. Everyone was on their feet cheering. I jogged from the back of the room and leapt onto the stage. I felt like a rock star. I did some stand-up, and then I told everyone what it’s like being a doctor who also had MS. I killed!¹ The following week, requests started pouring in for me to give talks at locations all over the country about MS—both from a medical point of view and from a patient’s point of view. Soon after the show, my schedule was full. I had forty-five gigs booked in thirty-five different cities. I was on tour.

The thing about being on tour is that it takes a lot of time and energy. Given the fact that I was a husband, a father of two, a doctor and had a major neurological disease, I was already pushing the limits. Now I had committed to a thirty-five-city tour, and I realized that I had a lot on my plate. Family has always been my top priority (followed closely by nachos and watching my favorite stand-up comedians), so I wanted to make sure that I did not spend any more time away from home than necessary. I managed to schedule all my presentations to be Friday night/Saturday morning combinations so that I could say good-bye to the wife and kids on Friday morning, leave my home Friday at midday, do the shows, and be on my way back home within twenty-two to twenty-eight hours after having left so I could kiss the kids good night on Saturday and my wife and I could settle in for our weekly game of canasta.²

During the tour, I had the chance to meet many people. The doctors I met across the country were great. They were mostly neurologists who were interested in trying to find out how they could improve their MS patients’ care. One thing I learned was that while many of the physicians in certain regions of the country wanted to use a certain therapy for their patients with MS, their decision-making process was sometimes influenced by what the local insurance monopoly dictated. Some doctors I met wanted to give therapy Q, but the insurance company put requirements that the patient be tried on drugs X, Y, and Z first before they would approve drug Q, even though there was no scientific data backing up this policy. In another location, the insurance company said that the doctor’s office could administer a medication but the doctor had to buy the drug from the insurance company’s pharmacy. The thing was that the insurance company’s pharmacy had jacked up the price so much that the doctor would wind up losing money on the project after filing for reimbursement from the insurance company. It was disturbing.

I also met some physicians who didn’t really enjoy the time they spent with their MS patients. Some said that MS patients took too much time in their schedule. Others complained that their MSers would bring in a stack of papers that had all sorts of misinformation downloaded from the Internet. They said that they couldn’t understand what we MSers meant when we said, It feels like my whole back is on fire all the time or I slept for sixteen hours yesterday, and I still don’t have enough energy to get off the couch. Who can blame them? In medical school and residency, we learn about things that can be measured, touched, heard, seen, and smelled. These, for the most part, are tangible things. The intangible things, like sensations that are outside of the norm (called paresthesias), are hard to teach and impossible to learn if the student doesn’t accept the fact that some things don’t follow the logic of medical reasoning. Comprehension of something that isn’t tangible and trying to fit it into the dogma of medical knowledge is an art. As in any art, there are some people who can create it, there are some who can appreciate it, and there are some who just don’t get it. From my experiences working with colleagues in medicine, I’ve seen two groups of doctors who can understand what it feels like to have MS. The first is the group of doctors who have multiple sclerosis and feel comfortable sharing this side of their lives with their patients. We have an inside line on what the disease feels like and what issues need to be dealt with. Then there’s a collection of doctors who have been blessed with a combination of open-mindedness, intelligence, and caring. Even though they don’t have the disease, these special people can appreciate the feelings that we MSers have as observers and use their medical and social talents to help us out.

Then, of course, there are doctors who just don’t get us. Sometimes they look at us as roadblocks on their otherwise concrete medical highway. For these otherwise fine physicians, I would like to offer this. The clinical care of MS patients is challenging both intellectually and emotionally. To serve these patients well, we need to recognize and accept something:

What we know about how an MSer feels is greatly outweighed by what we do not know.

If this is not your cup of tea, that’s cool. Have coffee instead, and leave MS for the docs who thrive on it.

Aside from the medical aspect of the tour, the people that I met and the places that I visited were amazing. Many people (patients, caregivers, doctors, hotel employees, taxi drivers) had interesting questions, ideas, and stories. During my shows, I have a question-and-answer session at the end. I leave note cards on the attendees’ tables before the show. I tell them that if they have a question during the show, they can either raise their hand or, if they do not feel comfortable speaking in front of other people, write it down on the note card. After the show was over, I would collect the cards and answer their questions as best I could. At the same time, I would listen to the patients and caregivers who offered their own experiences in dealing with MS issues in their lives. The questions were always interesting. I always made sure to let everyone know that all questions are great. People would sometimes say, But I don’t want to sound stupid. I would tell them that the thing to remember is that there is no such thing as a stupid question. Then I would add that there actually is one stupid question:

The only stupid question is the one that goes unasked.

The greatness of a question comes not only from the question itself but also from how much thinking the question can engender. If you ask a question that no one has asked before, you’ve found a key to a whole new world of discovery. By asking a question, a person is stimulating others to think. And even if a question might sound simple to one person, there are ten other people who are glad that someone asked it.

It was also enlightening to fly into and out of so many different cities. Some were big (Chicago and Atlanta). Some were small (Lincoln, Nebraska, and Camp Hill, Pennsylvania). Some audiences were louder (Brooklyn, New York) than others (Waltham, Massachusetts). But one thing was a constant. The MSers I met around the country, no matter how different they looked or moved or sounded, shared a common denominator. They were not going to let multiple sclerosis stop them from doing what they wanted to do. And the supporting cast around us MSers (husbands, wives, parents, kids, cousins, neighbors, pets) are a stalwart group who put up with tremendous challenges and should be lauded right along with the folks who have been affected by our challenging disease.

By the end of the tour, I felt that I had started to see more clearly what the purpose of my contribution to literary medical science was. My calling was to speak from both sides of the MS world. I have arranged most of this book as a series of chapter-couplets. The first half of each couplet teaches about a topic from a medical science point of view (… from a Neurological Point of View). The content is factual, and valid medical references are cited. The second half of each couplet is written as prose and reflects my experiences, both as an MSer and as a physician (… from the Other Side of the Desk). Through this dualistic presentation of the world of MS in my life, I hope to help patients, caregivers, nurses, doctors, and whoever else is interested understand that they cannot understand what the world is like in the mind of another individual. Hopefully, if this concept is appreciated, it will help to fortify the gains that have been made to slow down our disease and then help to launch a unified onslaught of creative ideas that initiates the termination sequence of the medical condition called multiple sclerosis.

VFM*

Acknowledgments

In terms of the people who helped me to get this far in life, I want to thank:

My Family

Mom and Dad, Liz, Jenny, Amy, Aunt Ann, Grandma and Grandpa, Uncle Joe, the Sbrollinis, Tom and all the Cartys, Matt and all the Gilmores, Fr. Jon J. O’Brien SJ DO, my godfather Joe and his family and last, but far from least, Carla, Joey, and Sarina Dinardo.

My Friends

Scott and Susan Ehrler, Emil and Vivica Albanese, Paul and Gina Vambutas, Rich and Johnny Lynch, the Lynches, Dr. Steve Machnicki, Rebecca Sparrow, Dr.and Mrs. Peter and Deb Harvey, Ray Paprocky, Kathleen Pierce and the other great ABMs, Fred and Cory, Dr. Santo Terranova, Victor Schwartz, the Muccinis, the Josephs, Mr. and Mrs. Peter and Carmen Colletta, Mrs. Ann Marie Petrucci and Ms. Irene Constantino, all my friends from Dougalston, Mr. Ted Tierney, Fr. Emilio, and my executive assistants, Mercedes Cuascut, Ayja Cuascut, and Donna Fabbricante.

My Teachers

Mrs. Arcidiocono, Mr. Amara, Mrs. McKenzie, Mr. Young, Mme. Zezulin, Mr. Blatchford, Mr. Vose, Mr. Driscoll, Mr. Weimann, Mr. Sabatelli, Fr. Schwizter, Mr. Dimichele, Dr. Vaiganos, Mr. Walsh, Mr. and Mrs. Hannon, Mr. Barrett, Fr. Callahan, Fr. Kelly, Fr. DiGiacomo, Dr. Herbert J. Manz, Dr. Wesley Norman, Drs. John and Nancy Richert, Dr. Carlo Tornatore, Dr. Stan Cohan, Dr. Robert Laureno, Dr. Mike Sirdofsky, Dr. Marshall Balish, Shari from radiology and Graham from housekeeping at the Washington DC VA, Dr. Mitch Wallin, Dr. Roy Goodman, Dr. Mitch Freedman, Dr. Rick Munschauer, Dr. Steve Kulick, Dr. Frank Loh, Dr. Steve Schwartzberg, Dr. Tim Vartanian, Dr. Al Sandrock, Dr. David Langer, Dr. Michael Schulder, Dr. David Chalif, Dr. Avi Setton, Dr. Karen Black (along with Frank Scalia and Daniel Adams), and my most important medical teachers, my patients.

First

1.jpg

MY HOUSE IS YOUR HOUSE

W elcome. This is my life. My life consists of my family and friends, being a doctor, comedy, multiple sclerosis, teaching, religion, computing, woodworking, writing, jogging, nookie, thinning hair, the Yankees, reading Spenser novels, and thinking about God.

These are all things that are parts of my life. They’re things that came into my life, and I treasure all of them because they’re what make my life unique. This is Vincent Macaluso’s life. I do not live with any of them. They live with me.

It’s my house. It is up to me to keep the things that I have control of in balance. I value my family beyond all else in this world. My wife is the axis of my existence. We are blessed with two beautiful children. The four of us work through life together. We are a close family, in a cozy house. This allows us to create a tremendous home.

I love laughing. I love it when I laugh so hard it hurts and I can’t catch my breath. Sometimes I get lucky and I laugh so hard that I can’t catch my breath, and I start to black out, and I fall down. Then, when I’m lying on the floor, I start to think about how funny it must have looked when I keeled over. For me, that’s a win-win-win situation.

I like watching The Colbert Report because it makes me think about the things going on in the world around me. Dr. Colbert’s character brings up the absurdity of a situation or creates absurdity when there is none just to be a nudge. He goes fast, and you have to look and read and listen and think all at the same time. Stephen Colbert is smart. He challenges us. He has hair that does not move.

On the topic of hair, mine started an exodus several years ago. I didn’t worry about it because I realized that I was getting older and it was a natural part of life. But as it grew thinner, I saw some pictures of myself and thought I would look better with hair—at least for a few more years. I started medication to keep my hair, and it had been working pretty well to slow down the loss. Unfortunately, the numbers continue to dwindle despite the medication. The countless many are becoming the cherished few. Well, I did what I could, but if this is my lot, so be it. I know I could get hair transplants done, but my two children are approaching the launch pad for college, and I think the money would be better spent maximizing what’s inside their heads instead of maximizing what’s on top of mine. I think of the hair loss situation the same way I think about Joe Torre and the Yankees. They had a good time together, but once they no longer benefitted from being together, they parted ways.

Multiple sclerosis entered my life over twenty-seven years ago. At first I didn’t know what was happening. It was like some unwanted houseguest had arrived. My life was going on as usual, but suddenly I started to have strange feelings. Tingling here, decreased sensation there. I had trouble concentrating. Learning wasn’t as easy as it had always been. This flighty guest came and went with neither rhyme nor reason. At first, I didn’t know its name, but after diagnosis, I found out what it really was—an unruly guest. Sometimes with unruly guests, guidelines have to be set down. I had to find out what MS was all about. I had to find out what I could do to keep it in control. I also had to realize that some things I did not have control over. I decided to forget about that part so I could focus on the things that I could control in dealing with this morbus non grata. It was a big house I was running. Just because I found a chink in the foundation, I was not going to let the rest of what I had built get torn down.

I found a nice neurologist who specialized in MS.

I learned as much as I could about MS.

I got on a therapy to slow down MS.

I let my neurologist know if something new came up so we could decide what intervention we should make—if any.

I kept my eyes and ears open for new therapies that were coming.

I did not fight MS.

I saw what the situation was, and I did what I could to continue to make my home beautiful.

I asked for help.

I had good people around me who helped me when I asked for help.

I had people around me who helped even when I did not ask for it.

Or know that I needed it.

I was lucky that I had been able to lay such a good foundation for my home so that it was rock solid and ready to withstand storms when they hit.

While MS initially appeared daunting and unwelcomed when it showed up at my door, it turned out to be a crucial guest in my life. It helped me realize that while it is my life, it is still just that.

Life.

In life, there are no certainties.

There are joys.

There are marriages.

There are children.

There are diseases.

There are good people.

There are deaths.

There are challenges.

There are jobs.

There are careers.

There are disappointments.

There are successes.

There is laughter.

There are houses.

There is your house.

There is my house.

This book is written from both sides of the desk. The first half of most topics is written by me, Vincent Macaluso, MD, from a neurological point of view. In these sections, I’m writing to teach about the factual things in MS—what the disease is, how to treat it, and so on. The second half of most topics is written by me, Vincent Macaluso, a guy with a wife, two kids, a mortgage, a lawn mower that might or might not turn over after several pulls, and a burning desire to make people laugh. It is in these sections that I get creative. Everything written here is experiential. I write about how it feels to have MS, to take medications, to get a neurological examination, to receive life-changing news. The most important chapter, The MS ICE, is where doctor and patient meet, put their thoughts together, and try to make a contribution to the worlds of patients, doctors, and anyone who wants to learn about MS.

All right. I’m gonna go exercise for a while, then make some nachos and watch some stand-up comedy and think about poetry and fire and ice and the nature of God, and maybe I’ll have a beer.

The door to my world is open.

I hope you enjoy it.

Second

WHAT MS IS FROM A NEUROLOGICAL POINT OF VIEW

005Ch02LHemispherev02.jpg

What we’ve got here is failure to communicate.

—Captain, Road Prison 36, Cool Hand Luke

006Ch02Fig01TheCNS.jpg

Figure 1. The CNS.

The CNS is composed of the brain and the spinal cord.

W e will begin our journey in the central nervous system (CNS), which is made of the brain and spinal cord (see figure 1). Of the two, the star is the brain. In fact, it’s so special it’s sequestered in its own private room—the skull. The fact that the brain is kept separate from the rest of the body makes it even more mysterious. Before CT and MRI imaging came along, the only way to see what it looked like was to cut open its protective case and take a look around. When seen up close, such as during surgery, it doesn’t appear to be doing much. The surface glistens and pulses slightly with each heartbeat. At first glance, it appears to be similar to other organs, like the liver or kidneys. Upon closer inspection, however, its surface appears convoluted, like a walnut. How come it doesn’t appear uniform like the other organs?

Unlike other organs, the brain does not do a fixed number of tasks, repeatedly, for the entire life of a person. It’s the organ that has a new job each and every day. It has to be expandable but cannot grow any bigger. It does this by having its many different computer processors, called neurons, make new connections based upon the tasks that they’re given. It upgrades continuously. Our brains are made of about one hundred billion neurons. They’re organized into different functions, placed in different locations, set in a thin, gelatinous matrix, and then stuffed into an irregularly shaped carrying case. This is what gives it a walnut-like appearance.

Extending from the base of the brain is its partner, the spinal cord. It too has some nerves that have special functions, but its major function is to act as a conduit. It’s the main highway carrying information from the brain to the body and from the body to the brain. Multiple sclerosis (MS) is a disease that affects the nerves that are in the brain and spinal cord.

The central nervous system (CNS) is what controls almost all the actions in the body. The nerves that make up the CNS send signals out along a part of the nerve called the axon. The axon has insulation around it called myelin. In MS, the myelin is destroyed by the body’s immune system. No one knows exactly why this occurs, but starting in the 1970s, methods for understanding, diagnosing, and treating this disease have made enormous strides. In this chapter, you will learn more about the CNS and you will also be introduced to the immune system and multiple sclerosis.

THE CENTRAL NERVOUS SYSTEM

007Ch02Fig02Diagramoftheneuron.jpg

Figure 2. Diagram of the neuron.

As mentioned, the brain and spinal cord make up what is called the central nervous system (CNS).³ There are two main cell types that make up the CNS—nerve cells (called neurons) and supporting cells (called glial cells). The glial cells, for the most part, make the skeleton that the nerves grow around. It is the structure and function of the nerve cells, however, that are the focus of the story. Figure 2 shows what a nerve looks like when you look at it very closely.

In total, there are about one hundred billion cells (nerve and glial cells combined) in your CNS.⁴ Those one hundred billion cells are arranged into many different regions that have many different functions. Most of those different regions make multiple connections to other functional areas of the CNS via pathways (also called tracts, fasciculi, or projections). For example, some of the pathways go from your eyes to another part of your brain that tells you that you see your best friend coming. Other tracts go from the part of your brain that saw the shape of your best friend to another part of your brain that stored the memory that your best friend still owes you ten dollars. Other pathways contain the nerves that go from your brain all the way down to your hand that lets you put your hand out as you approach your friend. There are other pathways that go to the language center in another part of your brain to say something to your friend. And then there is yet another part of your brain that makes the final decision as to whether you say Hi. How are you? and shake your friend’s hand or say, Hey, you owe me ten bucks, and I want my money, and you put your hand out, palm side up, waiting for the ten dollars.

While learning all the different functional areas and discreet pathways that the one hundred billion nerves in your brain and spinal cord make, there is one easy thing to remember. All nerves essentially work the same way. The nerves are set up very much like the computer in your home.⁵ Let’s say your computer has a fancy picture on it, and you want to send it to someone over the Internet (see figure 3).

008Ch02Fig03Nerveislikeacomputer.jpg

Figure 3. A nerve is like a computer with an external modem.

The computer sends the bits of the digital file along a cable to your modem. Your modem then modulates the picture into bits of information that can be sent over the Internet to your friend’s modem (see figure 4). Your friend’s modem then demodulates the information into data that her computer can interpret and display as a picture. Each neuron in our brain plays all of these parts. A neuron is 1) a computer, 2) a cable, and 3) a modem. For our purposes, the Internet will be the space between the axon terminal of the first nerve and the dendrites on the cell body of the next nerve. This space is called the synapse. The body’s Internet transmits information from the axon terminal of one nerve to the dendrites on the cell body of the next by using neurotransmitters.⁶

In our analogy, the computer is the thinking part of the nerve, which is called the cell body. The dendrites on the cell body are the receivers of information—the demodulating half of your modem. The cell body is the central processing unit of the nerve. It integrates the input from the dendrites and then sends its message, through a cable called the axon, to the nerve terminal, which then acts like the modulating part described above.

009Ch02Fig04NerveCompNetNeurotrans.jpg

Figure 4. Neurotransmitters are like the Internet.

In multiple sclerosis, the important part of the nerve is the cable coming off the cell body, which is called the axon. Like the insulation that surrounds the cable coming off your computer, there is an insulation that surrounds the axon. This insulation is called myelin. Myelin is the thing that is under attack in MS. Hold that thought. We’ll get back to it after we talk about the immune system.

THE IMMUNE SYSTEM

The other crucial element to know about in MS is the immune system. This is the system in your body that fights off the bugs that try to invade your body. If you cut your finger or someone sneezes on