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Friday, November 14, 2014

Multiple Sclerosis Diagnosis: A Moment Replayed a Thousand Times

There I was, on the freeway. Back before the days of “hands free only” cell phone use while driving. That ring of my phone, sitting on the car seat next to me, will ring forever in my memory. I recall the spot on the road, and every time I pass it I remember vividly what happened that day. Behind me on the road was my mother, driving home with me after my brain and spine MRI. This was my mother, who had witnessed first hand the slow decline of her own mother. My grandmother suffered from an incredibly progressive and destructive case of multiple sclerosis, and had died from complications in her fifties. My mother, the oldest of seven children, was forced to take over the load of responsibilities at around age 12. My mother’s family members were survivors of the ugly, destructive nature of this illness, one that took their mother away at a young age. MS was the monster in the nightmare, the beast lurking in the dark shadows of the closet. 
The story began a few weeks earlier. I began to experience a small area of tingling and itching on the back of my head. It seemed like nothing to me, as a veteran ER nurse. Must be some sort of dermatitis, skin irritation, allergy to some new shampoo. That seemingly benign, meaningless irritant was a harbinger of something I would never have thought possible. Never in my wildest dreams could I have imagined what that tiny spot was indicating. The itching improved and eventually disappeared, and I thought nothing of it. Soon after, I experienced a sudden, dense numbness of my right torso, and I could no longer overlook it.

The phone began to ring as I drove. My heart began to race, and I held my breath as I answered. On the phone was my physician friend and coworker, one I had known for many years. She said in a tentative voice, "Wayne is too upset to talk to you, he’s in the back room. He wanted me to call you. Your MRI is abnormal. Please come back to the ER right now." Wayne was my husband, and a emergency room physician at work on that day. At 34, that moment was the death of my youthful, naïve self. I asked with barely a whisper, “what is it? What IS IT??” I call it my near death experience, because my medical mind concluded that this was one of 2 potential diagnoses. This was MS, or this was a brain tumor. The voice on the other side was crying. My physician friend, through tearful sobs told me “Our working diagnosis is multiple sclerosis.”

I immediately pulled my car from the freeway, my mother following behind, completely unaware of what had transpired. We pulled into the parking lot of a local coffee shop, and I threw open my car door, tears streaming from my eyes and stood there, staring at my mother. “I have it, Mom. I have MS.” My mother hugged me in the middle of that parking lot, crying along with me. “We will get through this, Meagan. We will figure this out somehow,” she said, somewhat unconvincingly. I got into her car, and we drove in stunned silence back to the hospital. That ER was my place of work, and I was now a patient. Nurses are not used to being patients, and this just felt so wrong.

How did you cope with that moment, that day of diagnosis? Was it as vivid as mine was? That may well have been the slowest day of my life, and I find myself reliving it over and over. How do we, as MS patients, get over this moment? We can remember it as often as needed, but what is important is that we don't get stuck there in that moment. We must extract ourselves from that trauma, and find a way to move on.
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