Sunday, August 2, 2009

My MS Story Chapter 1 - My Left Foot Stages a Mutiny

Everyone has a story, but only a lucky few of us have an MS Story.

What I’m referring to is the story we tell about how MS first presented itself to us, what symptoms we’ve battled over time, and the failures and successes we’ve had in the treatment of the disease. We’re often telling our personal MS Story to other MS patients, friends, relatives, medical professionals, and sometimes in the case of bloggers or other media involved people, to anyone who will read it or hear it. So I thought it might be appropriate to post my personal MS Story here. It is by no means a typical story. But that’s one of the things about MS. There is no typical story. Everyone’s story is unique. Some are just uniquer than others.

In the late winter of the year 2000 I was jogging on my treadmill. I don’t recall exactly when, but no doubt this occurred during that oh-so-brief period between when one purchases a treadmill and when one throws it on the trash heap- the same trash heap where you toss your other exercise equipment and certain small kitchen appliances (my bread maker comes to mind). During that winter’s self improvement program I noticed a barely perceptible difference between my right foot and my left foot. My right foot quietly hit on the heel, and rolled to the toe as it is supposed to do while jogging. However, my left foot didn't quietly go from heel to toe. It made a slapping sound. If I really concentrated I could make my left foot quietly go from heel to toe, heel to toe, but it didn't want to. I made a mental note of this observation.

A few months later, after the snow in Northern Maine finally melted, I moved my exercise program outdoors. I noticed after only a few days of jogging that the same phenomenon was still occurring with my left foot. In fact, this uneven running gait was causing my left shin to become strained. "Okay," I thought, "this is starting to affect my ability to exercise so I think I'll get it checked out." I scheduled an appointment with my primary care physician. As I was waiting for the appointment date, maybe two weeks out, I learned from a coworker that a young salesman named Tom, who called on me at the paper mill where I worked, had been diagnosed with multiple sclerosis. I asked my coworker, “What the heck is multiple sclerosis, and how does it affect Tom?” My coworker replied that Tom "Has only a slight abnormality in his walking gait now, but it will get worse. They've reassigned him from Field Sales to Inside Sales to make it easier.” I made another mental note.

When I got to my doctor's office I was assigned to a physician's assistant (PA) instead of an MD. I described my symptoms to the PA and asked if multiple sclerosis was a possibility. He indicated that MS was indeed one of the many possibilities that we would need to eliminate. He scheduled me for an MRI, the primary diagnostic tool for MS. A few days after the MRI I received a phone call from the PA. He told me that the MRI was consistent with possible MS, but that I would need to see a neurologist in order to obtain a firm diagnosis.

My entire body of knowledge concerning MS was still confined to the brief conversation I had with my coworker about the young salesman. So, over the phone I asked the PA what it would mean for me as a person if I did have MS. He asked me how old I was at the time. I told him that I was 36. The rest of our conversation gets a bit fuzzy for me, as it was quite emotional. I can't remember his exact words but he said something that led me to believe that I only had about 20 years to live. I immediately began to imagine that I would never grow to be an old man, retire, enjoy my grandchildren, etc.

I drove to the middle school where my wife Kim works as a guidance counselor (I’m not 100% sure what a middle school guidance counselor does, but I know that my wife is very, very good at it). We went to one of our favorite spots by the ocean and sat and discussed this horrible news. I broke down. This was the only time I ever shed a tear about my MS diagnosis, and ironically it was almost a year later before I actually received a firm diagnosis from a neurologist. However, as I look back over the past 9 years, this day was my emotional low point.


  1. Thanks for sharing your story.

    For me, it's a little hard to read. I have a son with cystic fibrosis. There were a couple of minor signs that something was not quite right early on, but the doctors seemed unconcerned, so we were too, mostly. When he didn't sit up on time, we began to get concerned. After getting a little demanding, we started our medical mystery tour. We spent six months visiting specialists and having tests run before one smart gastroenterologist knew in an instant what he had. Adjusting to a serious diagnosis like CF (or MS) is rough, I know.

    Then, I faced a series of serious medical matters myself. At least they seemed serious to me. I kept waiting for the bad news. There were days I thought the end couldn't be too far. But, a serious diagnosis never came. And, finally, after much effort, I worked my out of the many symptoms through various alternative health care efforts.

    More recently, my sixty-five-year-old, always-healthy mother became jaundiced. After some serious prodding she went to the doctor. In a few days, we learned she had metastatic pancreatic cancer, stage IV. A month later (not quite a month ago) she was gone. Shocking.

    Life sure throws out challenges. The medical ones are among the worst. But, we keep living and, at least in my case, praying. Peace be with you. And, keep blogging.

  2. jdemott, thanks for your comments. I like your term "medical mystery tour". As much as we are impressed by what our doctors can do sometimes, it is amazing how far our society still has to go in identifying and treating so many disorders. Job security for those in the medical profession.

    Sorry to hear about your mother, and good luck with your son's CF, and whatever else life throws at you.

  3. Wow! The bible says for wives to be a HELPMEET, or helper for their husbands. Your wife is so lovely and also shapely, I'm sure clearing the way for the husband she loves is the best exercise. Thanks for sharing with us, you are in my prayers. I'll be checking in after class is over.
    Your pictures and video are wonderful, one day I will learn how to do that.
    Always Write,