"You have MS." Wait...what?!
It was an early July day and it was gorgeous outside. The sun was shining, the winds were mild and there was not a cloud in the sky. It was a perfect day for cycling. My sweetie and I peddled tons of miles along the ocean wall that day and felt amazing when done. We packed up our gear, threw the bikes atop the car and headed out to grab the coveted burrito lunch, typical reward after a ride. It was a perfectly normal weekend day for us in sunny San Diego.
Yet there was nothing normal about the hours, days, weeks and years that have passed since.
I remember sitting in the car ride home after our ride and noticed numbness creeping up along my right arm, through my jaw and up to my ear lobe. Totally not normal. I “tested” the feeling by repeatedly touching up and down my right arm with my left hand.
I asked myself, “Can you feel this? How about this, can you feel this? And how about right here, can you feel this touch? Yep, definitely numbing”. Wait. What?!
Only a wee bit freaked out, I exclaimed to my sweetie, “Something weird is happening! My arm is going numb! This is not right, should I be worried?!”
My sweetie, ever the calm one, reassured me, “It’s probably just a pinched nerve. Let’s call the doctor on Monday, just in case.”
I felt better and talked myself into believing all cyclists get pinched nerves and that this was all part of being an athlete. I thought it was nothing to fret over since we were just in the saddle, riding our legs off.
During my examination a few days later, my doctor thought, too, that the strange sensation I felt was probably just a pinched nerve and proceeded to tell me that this happened to her, while doing yoga. She said the numbness she experienced went away after ten days.
I felt reassured by this and thought, “If my doc got a pinched nerve then it’s totally normal for me to get one too. Whew! I am starting to feel better.”
I was startled as I left her office, when I heard her departing words, “If it doesn’t go away after ten days, we’re gonna scan ‘ya”.
During the ten days after, the numbness prevailed and a new sensation appeared in my right hand. I had immense pain and everything I touched felt like sandpaper. There were times when I felt “sparks” fly off my fingers, sort of like an electrical zapping. It was intense. I also experienced sharp pains in my upper right arm, as if someone was jabbing a pin straight through my arm. Again, not normal. I called my doc’s office and she ordered up an MRI. I got scanned and waited to hear back from her office. I started feeling scared, which only intensified as I started some research of my own, on the web. Bad idea. I discovered a wide variety of things could be wrong, ranging from a pinched nerve to cancer. Too much information.
In the meanwhile I decided to see a chiropractor. I thought a bone cracker would heal me. I saw her for a few sessions yet the numbness and pain never went away. It was after one these appointments that I got the call from my doc’s office, while sitting in my parked car.
All I can recall from that phone call was, “…the MRI confirmed a small bulging disc and unidentified shadowing along the spinal cord.”
I was referred to a neurologist and began to hear whispers of MS.
Yet after 15 vials of blood, a couple of MRIs, 1 spinal tap (it didn't hurt!), EEGs, and countless doctors visits, I did not qualify for Multiple Sclerosis. My neuro initially diagnosed Clinically Isolated Syndrome (CIS) as caused by the lesion on my spinal cord and because my brain was free of lesions. He prescribed Gabapentin for the nerve pain, which helped so much.
A year later, however, during a follow up visit in May of 2010, my neuro, my sweetie and I sat in an examination room and studied over the latest series of MRI scans. My neuro pointed out the new little lesion on my brain (non-symptomatic) and something new along my spinal cord.
“You have MS,” he said.
I tell the story of my MS diagnosis to share what I learned during the year leading into the official diagnosis. My advice? Call your doctor if something seems off about your body. Don’t delay. It may be nothing. Or it could be a pinched nerve. Or it could be something more serious.
Hope you’re well,
Do you celebrate your MS Anniversary?