My untold MS story (part 1). The beginning…

This is my real life MS story. The good, the bad and the ugly. Let me start by saying this. People who have MS have a “trigger” that activates and exacerbates the MS that lies dormant within them. “MSers” have had some significant “stress” in their lives, causing the MS to flare. MS can lie dormant until either physical or mental stress “provokes” the MS. There are people out there who have MS and don’t even realize it. This MS can lurk until they are much older. A divorce, death of a loved one or even a car accident, just to name a few, can activate MS. I have found that everyone with MS has a story. Most MSers can tell you the story of their misdiagnosis. They can also tell you about their MS “spark.” Sometimes they will even talk about the first symptom that they had years before their diagnosis.

After my divorce in 2000, I went “off the rails.” This time in my life that was full of dejection put me in a major “tailspin.” I began drinking and clubbing with a buddy who was also newly divorced. Up to this point in my life, I had consumed very little alcohol, so the effects were magnified. As an introverted person, the outcome was merely drinking as I did not dance and I was too shy to date. I was drinking and clubbing nearly every weekend while working all week. This destructive lifestyle lasted almost a year.

My divorce left me with plenty of extra bills as well. These financial requirements meant that I needed to work two jobs to get back on “financially stable ground.” I worked five days a week as an engineering draftsman. I also worked many evening and weekend hours at a local Walmart. Attempting to climb out of this erroneous alcoholic lifestyle, I began to pull myself together.

I was heavier at the time of my divorce. The fantastic food of my marriage really “packed on the pounds.” During my seven-year marriage, I had “nurtured” a 40-inch waist. I began to lift weights. My friend had always lifted weights, so I decided to join him. Steadfast in my determination, this new physical training went well. I started out at a hefty 200 pounds with a waist size of 40 inches. I quickly began losing weight with my dedication to this new exercise regimen. I dropped weight very quickly, too quick some have said. I lost so much weight that I thought I might fall through the sewer grate. After all of that exercise, I became a svelte 125lbs guy with a 29inch waist. However, I QUICKLY learned that to find a pair of 29inch pants you must visit the boy’s department. I also learned that pants that small have pockets that are WAY TOO SMALL to be useful.

One day I woke up, and something felt “wrong.” I went to work that day and as I tried to talk my speech was a “garbled mess.” When I tried to speak to people, it was like I a bunch of marbles in my mouth. I went through the day thinking that it must be stress. Remembering a phrase that I had learned in the Marine Corps, I began to “adapt and overcome.” I became more of a methodical person. I spoke slowly and would repeat myself very carefully without being asked. I would always “THINK” the right words. However, only when speaking out loud would I know if things sounded correct. Many times, I would think to myself that this would stop and go back to “normal,” very soon. No matter how frustrated I got, my co-workers were patient and understanding.

After nearly a week had gone by, my disheartening verbal issues were still present. I decided that it was time to see a doctor. All of my life I rarely saw doctors. I was sure that my appointment must have told my doctor that this was an important issue. The moment that I finished explaining my problem to the doctor, he said without hesitation: “You have mini migraines.” He then gave me some medication. Over the next few days, the medication did not change anything. I went back to see my primary care physician. Nearly a month had passed. My primary care doctor said, “I recommend that you see a neurologist.”

At this point, the speech issues had disappeared entirely. I started to debate whether I should continue with this medical testing. On the one hand, it was inconvenient and time-consuming. I also had to miss the work that I truly enjoyed. On the other hand, I had insurance, and I rarely used it. Not to mention, it would be one thing if it were just my family doctor. However, my PCP was now sending me to a neurologist. Something told me that this was important.

Over the next month, I had several strange medical tests. For the first test, I had to look at a TV screen that showed a black and white checkerboard. In the center of this checkerboard, there was a black dot. I was told to keep my eyes focused on this spot. On this checkerboard, the squares would rapidly alternate between black and white. The attendant continually reminded me to “keep your eyes on the dot.” I don’t know how well most people would do with this task. However, my eyes are attracted to movement. “Keep your eyes on the dot!” he said, repeatedly. If I had a nickel for every time that he said those words, I’d have like a dollar.

The next test was a test of my brain. The nurse had a “swim cap” looking thing which was prodigiously punctured with metal “prongs.” These metal “studs” were connected by wires to a machine for reading brain waves. The nurse took a gel and put it on the underside of each of these metal nodules. At this point, she took the swim cap and placed it on my head. She then began carefully wiggling and digging each one of those metal nubs into my skull. She explained that she had to make sure that there was no hair to block the connection between these metal prongs and my “brain bones.” Keep in mind that I had an extremely short Marine Corps haircut. This nurse finally had me lie on a padded exam table in this dark room. She then made me aware that, it was okay if I fall asleep during this test. I don’t know what they were testing, but I had dozed off several times. It was a dull test for me.

The last test that they performed was called a “lumbar puncture,” known initially as a “spinal tap.” I waited in a cold hospital room. I sat on a medical bed while wearing a hospital gown. A nurse hooked me up to a machine that continually watched my heart rate and other vital information. Finally, after thirty minutes the doctor came in. He began explaining the procedure for the lumbar puncture. I interrupted him politely and said: “With all due respect doc, I don’t want to know how ‘the sausage is made,’ let’s just do this.” It had to do with a needle and puncturing my spine with it. I did not want to know. He had me lay on my side with my spine facing him. I had to bend my knees toward my chest and hold that position. Positioning myself like this opened up my spine for him to slide a needle precisely between the bones, I think. As I was in that spot, well I’m not 100% sure what he did. I did not want to see, but a needle was involved. However, the doctor did an excellent job with the lumbar puncture. This compared to the horror stories that I have heard from other MSers. In comparison to these other stories, I had less pain and discomfort.

The doctor had scheduled these tests over several weeks. My primary care physician called me into his office, on a brisk October day of 2001. I sat on the exam table, wondering what he would say. When the doctor came in, he pulled up and sat on a wheeled metal stool. In a calm and clear voice, he told me “you have Multiple Sclerosis.” My next question to him was simple: “OK doc, what’s next?”