Thursday, August 13, 2009

My MS Story Chapter 3 – Lesions and Spinal Taps and Chemo, Oh My!

In the period of only a couple hours, the time it took me to limp around Jordan Pond, my situation had progressed from confusing to unsettling. Something was definitely wrong, and now I felt a strong desire to figure out what it was. I would get my answer soon enough.

I reported the Jordan Pond incident to my neurologist and he ordered the specific diagnostic test that in retrospect we should have ordered from the beginning. I underwent an MRI of my cervical spine, instead of my brain. Most often MS lesions show up in the brain, but for about 10% of us with MS the trouble starts in the spinal cord.

My neurologist and I viewed the MRI films together for the first time. I remember it so vividly. He lifted the oversized translucent prints from the manila envelope and placed them on the backlit viewing panel with a sense of purpose. After all, he was already 45 minutes behind on his appointment schedule, and had earlier predicted that he would find nothing unusual or interesting in these films. As the first few films were quickly examined he whispered under his breath something to the effect of “nothing interesting here, nope nothing here..." Then came that most fateful moment when everything started to move in slow motion. The neurologist stopped in his tracks and began to study a particular film in detail, with me watching over his shoulder completely oblivious to what I was looking at. In subsequent years I became fairly adept at discerning my own MS lesions from all the surrounding stuff that is supposed to be on an MRI. It's a skill akin to looking at an ultrasound of an unborn child and trying to determine the baby’s gender. “Look there, between his legs. Congratulations. You’re having a boy!”

He grabbed the offending film and without a word took it over to one of his associates, who I later learned was an MS specialist. I watched from a distance as they both pointed and nodded, quickly reaching agreement on my fate. He came back and gave me the bad news, “I’m afraid I’ll have to eat my words. This looks abnormal,” pointing to what looked like an innocent little blurry spot on my spinal cord, in the middle of my neck. “What I’m worried about is MS.” I suspect he was momentarily unconcerned about his minor appointment scheduling problems. I had his full attention.

I was purposefully stoic, as if refusing to justify this news with a response would somehow alter its impact. We went back to his office to talk. No doubt he thought the “you have MS” speech would blow me away. I don’t envy this aspect of a doctor’s job (or quite a few other aspects for that matter). As he was trying to console me and indicate that in this day and age many of his MS patients get up and go to work every day, I politely cut him off. I indicated that MS was mentioned to me very early on, that I was familiar with the disease, and that I could deal with the diagnosis if that’s what it was. He didn’t know it, but I had already grieved and come to grips with MS nearly a year earlier.

The neurologist scheduled me for a lumbar puncture, more commonly known as a spinal tap, to confirm the diagnosis. He indicated that we would be talking about MS. He left no hope that the test results would refute the MRI. The spinal tap was a mere diagnostic formality. After the procedure we made an appointment to go over the test results and discuss a treatment plan. I asked if that would be a good time to have my wife come in with me. He said that it would be.

The spinal fluid tested positive for MS indicators. On October 22, 2001, with both Kim and I sitting in my neurologist’s office, I had my official diagnosis. Not only did I have MS, but based on my presentation and test results I was more specifically diagnosed with Primary Progressive Multiple Sclerosis, or PPMS.

I learned that even though the more common form of MS, Relapsing Remitting Multiple Sclerosis (RRMS), had several FDA approved treatment options, there were no approved disease modifying agents for PPMS. My neurologist gave it to me straight. He told me that due to a variety of factors I was likely to have a more aggressive course of MS (it turned out later that he was correct). So we decided to try a relatively new MS treatment that is actually a chemotherapy drug, called Novantrone. This was a very aggressive approach for someone newly diagnosed with MS, who frankly had a mild symptom profile at the time. But my neurologist and I both had the same attitude- I’ve got an aggressive form of MS, so let's not pussyfoot around. I can’t tell you how grateful I am to have a neurologist that listens to me, and who guides me through these difficult decisions.

So what was my state of mind, now that my life had been turned completely upside down? Because of genetics, personality, or internal wiring, whatever you want to call it, I am not an emotional person. This is a blessed trait when things are going poorly. I was not pleased that I had MS, but I did not have strong negative feelings that induced despair or depression. I want to be clear here. It was not that I overcame any strong negative feelings by force of will or extraordinary intestinal fortitude. It was that I never had the strong negative feelings in the first place. Others have described the manner in which I am dealing with MS as brave or even heroic. However, I consider myself simply fortunate to have this innately calm disposition.

So I finally had a name for my problem, and I was anxious to get busy fixing it.
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  1. The paragraph about your stoic reaction to the doctor made me chuckle, it is definitely so "You". -Mark

  2. Hey Mitch, looks to me like your life as a blogger is off to a grand start. Your writing is easy to read, direct, and to the point. Perhaps most importantly, you have a point. I'm really looking forward to keeping up with this work in progress.

    As for your being wired for stoicism, my gut tells me that your whole "New England Yankee stiff upper lip" thing most likely comes unglued by the antics of our favorite baseball team. I'm generally not a stiff upper lip guy, having grown up in a typically neurotic New York City family, and when Buchholtz was thrown out at the plate in the top of the ninth tonight, I would have thrown something through my TV if I had enough strength left in my right arm. Happily, the Sox still managed to score 6 runs in the inning, so the night ended well. I like to think that Buchholtz' bizarre baserunning blunder mustered up a torrent of emotion in you as well, maybe more so than news of your MS diagnosis.

    Am I at least a tiny bit correct in this assumption?

  3. Mark, you know me too well.

    Marc, thanks for the compliment on my blog. Coming from my favorite blogger, that means a lot.

    My wife and I have always joked that there are only 3 things in this world that would ever cause me to lose my temper. One was golf. The game frustrated me to no end, but I could not quit, that is, until I just couldn't play anymore. For most golfers with a progressive disease, or just old age, it is a terrible loss when they can no longer play the game they love. For me, it was a wonderful day! Freedom at last from that evil little white ball. Folks have suggested I take up handicapped golfing. Hell no!

    The second thing that I could lose my temper over was my relationship with my teenage daughter. She is 20 now, and lives in her own apartment, and has become a wonderful young woman. So actually we get along famously now.

    The third thing, well, you hit the nail on the head. But even my frustration with the Sox, Patriots, and to a lesser extent Celtics, is tempered these days. I just shook my head last night when Buchholtz was thrown out. No shouting. No cursing. I'm quite proud of myself. If I can conquer this final demon, I may achieve true Nirvana.

  4. I havePPMS, can you tell me what treatments if any have been successful in helping to slow down the progression? I am 56 years old and have advanced PPMS, and have not even gotten into a clinic yet due to the waiting time. Where I live here in SC there is no treatment available according to my neurologist.

  5. Lloyd,

    I'm sorry to hear of your situation. Unfortunately, there are no known treatments that slow the progression of PPMS. You might discuss options for off-lable use of certain drugs with your doctor. You may also consider CCSVI treatment. Click here to read my posts about it: