“Now don’t look,” he said, “but am I pushing your big toe up or down or to the left or right?”
I gave it my best guess. “To the left?”
He held his hand under my right foot and tilted it slightly at an angle. Suddenly, it trembled uncontrollably. I felt my mouth drop open. “What in the world?” My extremities weren’t supposed to move without my consent. He let go of my foot with a serious expression.
“It shouldn’t do that,” he said.
For the next several minutes, he poked my legs, checked my reflexes and watched me walk around the room.
Finally, he gave it to me straight. “I seriously suspect MS. Let’s do an MRI on your brain, neck and spine.”
Two days later I checked in at the hospital for my MRI. Once situated on the table, the technician handed me a small, remote-like device. “In case of an emergency, you can push this button,” she said. Then she slid me into the tunnel. I didn’t think I was claustrophobic, but after a quick peek, I decided it best to keep my eyes shut.
I had hoped to sleep, but soon realized that wasn’t possible. Even with earplugs the machine was extremely loud. I’d swear someone was pounding the outside of the machine with a hammer. Then came the vibrating. Then thumping. And every now and then, spine-chilling screeching. I was tired, but there’d be no sleeping through that.
The first few scans were relatively uneventful. I learned to ignore the noise and remain fairly still. Then suddenly I felt it: an annoying little tickle deep inside my left ear. You know the kind. It’s impossible to reach, but you try anyway because it’s driving you completely insane.
Think of something else ... think of something else …
But all I could focus on was that annoying itch. It became more intense. Like a tiny bug slowly crawling inside my ear. I was probably forty minutes into my current scan. I didn’t want to start over. But this felt like cruel and unusual punishment. Thankfully it finally passed. But in that moment, I would’ve given anything for a Q-Tip.
The only thing worse than the itchy ear episode, was the contrast die. For some reason my body didn’t like it. Less than five minutes after getting the shot I was pushing that emergency button.
“Is everything okay?” she asked through my headphones.
“Uh, no. I’m gonna be sick.”
I’ll spare you the details, but I will say this: I’m so very grateful that my wonderful technician had a strong stomach, a heart of gold and most importantly, cat-like reflexes.
A couple weeks later it was back to the neurologist to hear the results. It wasn’t what I’d hoped.
“Your MRI shows active plaque in your right frontal lobe.”
I was silent. He continued.
“I’d like you to have a lumbar puncture,” he said. A lumbar puncture? I wasn’t sure what my lumbar was, but I felt fairly certain I didn’t want it to be punctured. The look on my face must’ve shown my confusion.
“It’s like a spinal tap,” he said. “We need to check your spinal fluid for protein. That’ll tell us for sure if it’s MS.” I wondered how many tests I’d have to endure before we finally figured this out. Besides, what did it matter? I didn’t know much about MS, but I did know there wasn’t a cure.
“So what if it is MS?” I asked. “There’s nothing we can do about it, right?” I knew I sounded negative, but it was a valid question.
He looked me straight in the eye. “There’s a lot we can do about it.”
If nothing else, I liked his attitude.
On January 25th I had a spinal tap / lumbar puncture. The whole process took longer than I expected. First, they drew blood. Then they X-rayed my back. Finally, a little man in a white lab coat walked in with a long needle.
“Okay, now lean over and just relax.”
Easy for him to say, I thought. He wasn’t exposing his rear and bracing himself for a stab in the back.
“Good,” he said. “Now hold very still …”
Of course that’s when my body involuntarily jumped as I felt pressure.
I tried holding very still, hoping he’d soon say the words “all done.” But I waited. And I waited. I was starting to feel sweaty. Nauseous. Lightheaded. I wondered, how much fluid did he need? If I were a car, I’d be at least a quart low by now.
Over the next couple of days I didn’t feel well. My stomach was nauseous and my head pounded. I spent time in bed, which gave me plenty of time to surf the internet. When I grew tired of Facebook and Instagram, I worked up the nerve to Google “Multiple Sclerosis.”
Multiple sclerosis (MS) is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body.
Reading the long list of symptoms felt like a punch in the gut. Fatigue. Vision problems. Clumsiness or lack of coordination. Loss of balance. Tingling sensations. Muscle weakness. Dizziness or vertigo. The list went on.
Now it seemed so obvious. What else could it be? I found myself with a strange new concern. What if it wasn’t MS?
However on February 2, 2016, my neurologist officially confirmed it. My initial reaction wasn’t anger or fear. It was actually relief.
I wasn’t a hypochondriac. I wasn’t crazy. I finally had answers. Go figure, I thought. After all this time, my problem actually was in my head. And now I had the MRI to prove it.