Thursday, November 26, 2009

My MS Story Chapter 19- Measuring the Immeasurable

Laboratory mouse
Image via Wikipedia
Because I participated in a clinical trial in 2005 - 2006, I have an appreciation for the life of a lab rat. OK, that’s a bit of an exaggeration. I took part in the trial of my own free will, and I got to go home almost every night. Never did I sleep on a bed of cedar shavings, nor did I drink from a bottle suspended on the side of my cage.

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.

For the next installment in this series, click here.
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  1. One week ago today, I had my first Rituxan infusion. Since I have RA in addition to MS, it is 'on-label' for the arthritis but really we're hoping that it also stops the break-through relapse activity. I am RRMS and had been on copaxone since diagnosis. My MRIs look pretty good (and stable) however the relapses keep coming.

    I had moderate (grade 2) infusion reaction at about 45 minutes into the infusion, even after pre-medication with benadryl, steroids, and tylenol. We had to slow the infusion down to a crawl and administer more benadryl and steroids. The entire infusion took about 9 hours!!

    The day after, I felt barely "lighter" in my limbs, just enough that I wondered if it was my imagination or not. Today I realized that I had leaned on the bed ON MY KNEES, which is something I haven't done in so very long.

    Fingers crossed that this will help the MS and RA. It is disappointing to read that Rituxan didn't prove to be overwhelming effective in PPMS (at least from what I've read in journal articles). I hope that you will continue your story....I'd like to hear what else happened during your time on Rituxan. :)


  2. Lisa,

    Thanks for stopping by and leaving a comment.

    This is an excellent use of Rituxan...killing two birds with one stone.

    I think the lightness you feel is from the steroids. Steroids act much more quickly on you than Rituxan does.

    I bet you will have no negative reaction on your next Rituxan infusion. Do you plan a second one?

    My Rituxan story is a long one...will take me weeks to get to the end of it in this blog. I won't make you wait. Send me an email at this website and I'll give you the whole, condensed story.

  3. Fellow MSer here. Found your blog via Google Reader suggestions.

    I have appreciated your writings and am glad to read that you have come to peace with MS. Thanks for sharing your experiences. It really helps to read about other fellow travelers.

  4. Darren,

    I'm glad you are enjoying my blog.

    I visited one of your blogs and found an Excel Spreadsheet describing your exacerbation history. It's nice to know I'm not the only person out there who uses spreadsheets for, um, uncommon purposes.

    Good luck with your MS.

  5. Our life stories are similar. I am (was?) an electrical engineer, working on a PhD in biomedical engineering at Hopkins back in 1999 when I was Dx. I ended up with RRMS so was able to work until 2006 before becoming disabled enough not to be able to.

    In my time of thinking and planning I've tried to engineer a "Unit System" to keep track of what's important on a daily level while tracking things that need to happen over time. Here is a link to give you an idea -

    As a fellow engineer I would love to know how you decide to spend your time during each day. On one hand it's terrific to have almost an infinity of free time without a j-o-b, yet on the other hand it seems tragic to "waste" so much free time. Striking a healthy balance while planning for the guaranteed crappy stuff on the way takes some effort.

  6. Hmmm - well my old Unit System post I linked you to is outdated so I've written up a new post describing the current system -


  7. Darren,

    Great stuff! I'll dig into it more in the next couple of days and get back to you.


  8. Cliffhanger? Wait, I need resolution of the conflict and closure at the end of these things!

    See you next weekend.

  9. My life has become one big cliffhanger. What can I say?

    We just restocked the wine fridge in anticipation of your visit. Now if I can just keep Kim away from it this week, we can partake next weekend.