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But, like a lab rat, I was given a substance that I officially did not know the composition of. I was poked and prodded and measured and tested and treated again and again for a period of two years. At times I felt as if I was in a maze, so the comparison has some merit.
Despite all the trips to Worcester and everything that I was asked to do, I never felt overwhelmed by it all. In fact, I was thrilled to be participating in this experiment. The buzz of activity associated with the trial made me feel that I was fighting back against MS. At least I was doing something. Furthermore, since I was pretty sure I was on the trial drug and not the placebo, I knew there was at least some possibility that I could be winning the battle with MS. The fact that I was contributing to scientific knowledge about MS was not lost on me either.
But how could we tell if the trial was working? In situations like this, it is the nature of engineers, scientists and doctors to try to quantify their observations. It's not enough to say that a patient has MS for example, or even to say that a patient has Primary Progressive MS. We need to measure the patients’ capabilities so that we can assign numerical values that describe just how bad their MS is. Throughout my life I've been as guilty of this need to quantify as anyone. I see the world so much more clearly when I can describe it with numbers.
In this clinical trial there were two primary, numerical measures of my disability. These two assessments were called the EDSS and MSFC tests.
Expanded Disability Status Scale
This is perhaps the most widely accepted MS disability metric. A completely healthy patient scores a zero. A patient who has difficulty walking more than 200 meters scores a 5.0. Someone confined to bed but still able to eat and communicate gets a 9.0. Death by MS scores you a 10.0. This is one of those rare situations where a perfect 10 is highly undesirable. When I started the trial my EDSS score was a 6.5. Today, my EDSS score is an 8.0.
Multiple Sclerosis Functional Composite
This is a three part assessment that measures walking ability, hand dexterity, and cognitive skills. The walking test was a simple 50 meter timed walk down the hallway. The hand dexterity test measured how long it took me to place 9 little round pegs into 9 holes (don’t worry, there were no square pegs, although on some level that would have been appropriate). The cognitive test was very interesting. Give it a try yourself. Here's how it worked.
A CD player read off random digits between 1 and 9, at a regular and relentless pace, pausing about 3 seconds between each number. My job was to add the previous two numbers in my head and verbally give the correct answer to Roberta, who was keeping track. For example, the red numbers below are the ones that the CD player read to me, and the black numbers are the answers that I gave. Remember, the red numbers were read off at a constant cadence, with a three second pause between each one. It was during this pause that I would do the quick addition in my head and give my answer.
6 (because 1 plus 5 is 6)
8 (because 5 plus 3 is 8)
12 (because 3 plus 9 is 12)
13 (because 9 plus 4 is 13)
And so on. This went on until 30 or 40 numbers had been read to me by the CD player. I scored very well on the test, but I hated it with a passion. It required a lot of concentration to avoid becoming confused. If I hesitated even a little the damn machine didn’t care and just kept shouting out numbers at me without mercy.
In addition to the EDSS and MSFC tests I was also given a bajillion of those general neurological examinations where you are asked to complete tasks like following the neurologists finger with your eyes, or using your index finger to alternately touch your nose and his hand as fast as you could, etc., etc. I had several of those wonderful MRIs. Before each one I would secretly pop a couple of Valium to counteract my claustrophobia. I was given one spinal tap during the trial. The three spinal taps that my local neurologist had given me over the years were relatively painless. This spinal tap doctor (not Peter) was a butcher. He kept poking and poking without hitting the spot he was looking for. Each poke sent an electrical shock up my spine. I shiver just thinking about it.
And then there was the blood testing- always the blood testing. I was tested every time I showed my face at the hospital. On those days when I had infusions, I was tested before and after the infusion. I was a virtual blood spigot.
My disease had progressed without interruption beginning when I first noticed my left foot slapping on the treadmill many years earlier. Then something most peculiar happened. After my first pair of Rituxan infusions the disease progression stopped- dead in its tracks.