CONTROLLING THE FIRE w/Dr. Robert Pace

​There are many things I try to do when I meet a patient newly diagnosed with Multiple Sclerosis, but there's really only one that I have to do. 

I’ve seen hundreds of patients in this situation, and, although the outward manifestations vary from person to person, the underlying emotion is always the same: fear. This is absolutely understandable. All chronic conditions bring fear, the magnitude of which is usually proportional to how unpredictable that condition is. There are few medical conditions that are as unpredictable as Multiple Sclerosis.  One MS patient may live her entire life with few (if any) problems. Another may accumulate dramatic disability over a short period of time. And everything in between. In medical school, if you didn’t know the answer to an exam question, you had a reasonable chance by guessing “Multiple Sclerosis”. No matter who the patient nor what the symptom, MS can cause it.  Newly diagnosed patients learn this in marathon Google sessions days before we ever meet. By then, most are armed with an array of facts about MS: its caused by the immune system, it affects young people, it can be “relapsing” or “progressive”, it damages “myelin”.  The problem is that, all though full of facts, search engines don’t always convey the truth. And facts out of context compound fear. So, this is the one thing I have to do. I have to help chip away at the fear. Fortunately, just like any other monster in a corner, shining light on a disease makes it much less frightening. So what is Multiple Sclerosis?

Doctors (especially neurologists) love to use big, complicated terms to describe things in order to make us seem smarter than we really are. So, if I followed the protocol, I’d say that Multiple Sclerosis is a chronic autoimmune condition of the central nervous system characterized by recurrent inflammatory demyelinating events separated in space and time. While this would be an accurate statement, it wouldn’t really help someone understand what they’re dealing with.  


Instead, I prefer to explain MS the way I actually think about it. 
Imagine that your brain and spine were a giant building where all of the decisions in your body were made. Inside there were millions of offices that dealt with different things; one might be in charge of extending your left thumb. Another may be in charge of sensing cold on your right foot. In another office, the color blue is recognized, and so on. In this case, Multiple Sclerosis would start off like fires. A fire starts in a particular office and causes damage. That might lead to a symptom (like difficulty extending your left thumb, or inability to feel cold on your right foot, or not seeing the color blue, etc.). BUT, it also might not. And, in fact, it usually doesn’t lead to any symptom. Why?  Because the brain is really, really good at getting all of these jobs done. If there’s a fire in the office that moves your thumb, that job gets moved into another office. This happens so quickly that you never notice the job wasn’t being done. Easy.

However, not all of these offices are the same. Some offices do jobs that can’t be easily moved. If a fire happens in one of these locations, a symptom arises. Over time, you may be able to rearrange the jobs such that the symptom remits. But you may be left with a symptom that doesn’t resolve completely, or at all. So, one of the most important factors that determines how many symptoms someone with MS does or doesn’t have is luck. Some fires just hit the wrong offices. 

Not all the variability is due to chance, however. Possibly the biggest factor in disease severity is the frequency that the fires occur. One person may have a fire, on average, once every 10-15 years. That’s pretty infrequent, but fires still happen multiple times over the course of her life, and she therefore has Multiple Sclerosis. Another person may have fires every 10-15 weeks. For him, hitting these critical offices is almost inevitable, and symptoms will accumulate much faster. 

These “fires” (which are started by the immune system) are what we are referring to when we say “relapse”. So, a patient with Relapsing-Remitting Multiple Sclerosis (RRMS) is not always affected by symptoms (remember, most relapses happen without the persons awareness). New symptoms, however, can crop up at any time.  Moreover, old symptoms that have previously resolved can come back when the body is under stress from something else. We may see this happen years after the original fire that caused them. In these situations, it’s not because a new fire is going on. Rather, the brain cannot continue to compensate for previous damage when its under stress. This is something we call recrudescence (again because of the trying-to-seem-smart thing).

There’s another layer on top of all of this. Imagine that building having fire after fire, year after year. Over time, a couple of problems start to crop up. One is that, eventually, you can run out of spare offices. The brain is incredibly adaptable, but it can only take so much damage before it can’t keep up with all of its demands. The other is that, after years and years of fires (along with any other damage that has accumulated over one’s life), eventually the structure of the building can become unsound. Then, the building can start to collapse in on itself, and symptoms can start to continuously accumulate. That is a very different problem, and hitting that with a fire-hose isn’t going to help. 

When this occurs, that person now has what we call Progressive MS. (Because neurologists love to needlessly complicate things, we sometimes refer to “Primary Progressive” and “Secondary Progressive”. If your neurologist insists on using these terms, just yell “shut up, nerd!” or something to that effect and we’ll usually pipe down.)


What can we do about all this? 
Science has known about multiple sclerosis since the 1800s. We figured out that MS had something to do with the immune system as early as the 1940s. But up until the 1990s, there was really nothing that we could do about it. Before this, we simply hoped that the fires would be relatively infrequent and would miss critical spaces. We could give steroids (i.e. the neurologist’s go-to treatment when we have no idea what to do) while a fire was happening to help it to go out faster. But there was nothing we could do to prevent fires. Then, in 1993, the first treatment became available that was able to reduce the number of fires that a patient would have. This was a big deal; so much so that the medication’s initial offering was done via lottery. This was when we started to play some defense against MS. 

Since then however, more treatments have become available, and within a couple of decades we’ve shifted from playing defense to playing offense. We now have over 20 different disease-modifying agents treatments (DMTs) that can alter the course of someone’s MS. Although these treatments approach the problem in very different ways, they all have one primary job: stop new fires. They are all fire suppression. Our hope with treatment is that, from the time it’s started, that there will be no more fires. 

​Management goes far beyond just drugs, however. MS a complex condition, and as such requires a complex approach to management. Diet, exercise, sleep, symptom and stress management are integral to a successful treatment approach. More than anything, I want patients to know that they have control. I don’t want them to have to live in fear of what the next fire will bring. Of course, nothing is within our complete control, but that doesn’t mean that we shouldn’t try. ∎