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Multiple Sclerosis from Both Sides of the Desk

Two Views of MS through One Set of Eyes

iUniverse

Each friend represents a world in us, a world possibly not born until they arrive, and it is only by this meeting that a new world is born.

— Anais Nin, author 1903–1977

My House Is Your House

Welcome. 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.

What MS Is from a Neurological Point of View

What we've got here is failure to communicate.

— Captain, Road Prison 36, Cool Hand Luke

We 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

As mentioned, the brain and spinal cord make up what is called the central nervous system (CNS). 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. 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).

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.

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.

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 you, bugs (like viruses and bacteria) try to get inside you and take over. The thing that prevents the bug from taking over your body is the immune system.

Now, Let's Put These Two Ideas Together

In multiple sclerosis, the body's immune system, for unknown reasons, turns on itself. Instead of just fighting off bugs and other invaders, it starts to attack the myelin that surrounds the axons in the CNS (see figure 6). This is called demyelination. When an axon is demyelinated, it can no longer carry the information from the cell body to the axon terminal of the nerve. If the message cannot be transmitted, then whatever function the nerve was in charge of doing (like telling a muscle to contract or helping a person pay attention when reading about neurobiology) cannot be executed! This can cause a lot of trouble for a person with MS (as well as for the people around the person with MS).

No one knows exactly why a person's immune system decides to turn on itself. There are many ideas about why this happens. It could be that a person is exposed to something in the environment, such as a virus or some other foreign substance, which looks like myelin on a molecular level. Normally, when the immune system sees a virus, it makes antibodies based upon the molecular structure of the virus. By doing this, if and when the antibody sees the same molecular structure again, it will be ready to immediately launch an attack and prevent a full-blown infection. 8 Possibly, in MS, if an invading virus has a molecular structure similar to the molecular structure of myelin, the antibodies that were made for the virus could then start to attack the myelin.

There is good evidence that our genetic makeup plays a role in having our immune system start attacking tissues within our own body. 9, 10 Most MS experts believe that the cause of MS is almost certain to be multifactorial (a combination of genes and something in the environment). In their paper, Genetics of Multiple Sclerosis: Swimming in an Ocean of Data, Sergio E. Baranzini and Dorothee Nickles put together the results of the largest genome-wide association study for MS, as of 2011. 11 Their synthesis confirmed the association of twenty-three genes with MS and reported about twenty-one other suspect genes. They also report on the data implicating the CYP27B1 gene variant as a heritable factor that prevents proper conversion of vitamin D from its inactive 25-hydroxyvitamin D form to its active 1,25 dihydroxyvitamin D form. The paper goes on to describe other statistically valid and reliable data, including the "brother and sister" relationship of MS with other autoimmune diseases like Crohn's disease , diabetes mellitus type I, asthma, psoriasis, celiac disease, rheumatoid arthritis, and Grave's disease. The number of newly discovered genes and gene variants associated with MS increases on a regular basis. At an MS consortium meeting in 2014, it was announced that the number of genes associated with MS was up to 159. Other potential causes of MS will be discussed again in the chapter dedicated to the immune system.

Conclusion

So there you have the essence of MS. After a nerve is demyelinated, it cannot transmit the message from the cell body, along the axon, to the axon terminal and allow for neurotransmitter release to communicate with the next cell. If it affects a visual pathway, a person might have trouble with vision. If it affects a coordination tract, movements can become clumsy. If it affects a behavior fasciculus, initiative can be impaired or lost. 14 We don't know the exact causes of MS, but we have many clues. The next chapter will discuss more of the specifics about how the immune system causes demyelination. Then, in subsequent chapters, we will discuss how to slow this whole process down.

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Excerpted from Multiple Sclerosis from Both Sides of the Desk by Vincent F. Macaluso. Copyright © 2015 Vincent F. Macaluso, MD. Excerpted by permission of iUniverse.
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