Something weird was happening with my left leg, a numbness that, over only a few days, affected large swaths of my leg up to my torso. When I could no longer tell whether the razor I was using to shave was touching my skin, I decided I needed to contact my doctor. I figured I had a pinched nerve.
The general practitioner ordered tests for Lyme disease and thyroid issues (both negative) and shot down the notion of a pinched nerve before she casually mentioned she wanted me to have a brain MRI.
“For MS?” I asked. Via online sleuthing I’d done before the appointment, I’d learned that multiple sclerosis—a potential cause of my symptoms—could be diagnosed with MRI scans.
The doctor hesitated but confirmed that she wanted to check for MS. After an anxious couple of weeks of waiting through the end of August 2012, a nurse called to tell me I had a mass at the bottom of my brain.
A ‘Mass’ Becomes a ‘Lesion’
The notion that I was walking around with a mass in my head was hard to comprehend. But the suggestion that I might have an incurable, unpredictable disease of the central nervous system was nearly too much to handle. So, I shoved my worries into the back of my mind and distracted myself with work and life with my three middle schoolers.
A second MRI ordered by a general neurologist I consulted found the same lesion as the first scan (the word “mass” had now shifted to “lesion”), but the doctor seemed skeptical about my reports of numbness. “MS doesn’t usually present like this,” he said. The pattern was “unusual.” There was something about his tone that gave me the impression he didn’t fully believe me.
The single lesion near my brain stem could be old, he said, adding that multiple sclerosis means there’s more than one lesion on the brain and/or spinal cord. He urged me to de-stress, maybe take more yoga classes, and see him in a few months. (In medical records about the visit that I saw later, the doctor wrote that since I had a history of anxiety “a psychosomatic manifestation is certainly a strong possibility” for the numbness.)
Anxiety doesn’t cause brain lesions, I thought.
New Symptoms Don’t Count
Months later, I told the neurologist that while the leg numbness had ebbed, the sensation on the back of my left hand and across the top of my left fingers had become dull, as if I were wearing gloves. He encouraged me to continue yoga and come back if anything new cropped up. I left confused, wondering why hand numbness didn’t seem to count as new.
By the spring of 2014, I began experiencing new symptoms along with the return of old ones: relentless nocturnal leg spasms, a tingling-radiating heat sensation on the left side of my abdomen, and fatigue that caused me to consume ever-increasing amounts of caffeine.
All of this can’t be a physical manifestation of anxiety.
This time, I saw an MS specialist who immediately made me feel comfortable. After completing a physical exam, he ordered a new MRI. Before I left, he seemed like he wanted to tell me something, wanted to hand me a folder he was holding. There were a couple of tense, silent moments. Ultimately, he handed over the folder—which contained information for newly diagnosed MS patients.
No Vacation From MS
The official diagnosis came a bit later, at the tail end of a couple of ugly weeks.
It started during a family vacation where my husband and I and our three kids traveled to Los Angeles. During our first morning there, the neurologist called to say he wanted to see me immediately. The latest MRI indicated I now had multiple lesions in my brain.
Temporarily stupefied, I told him I’d see him after returning to Boston in 10 days.
I thought I could carry on like normal and refused to acknowledge that being told I had multiple brain lesions—multiple—meant that I had MS. Instead, I did things I shouldn’t have, like hang out in heat and humidity. Some of us with MS develop heat sensitivity that can cause the very symptoms I experienced several days into the vacation.
I became violently ill while watching a performance at the Hollywood Bowl on a hot, humid evening, but attributed it to food poisoning from deli sandwiches. Extreme dizziness made me so weak that I required a wheelchair to get to our car.
The day we were set to return home, I awoke to dizziness, full-body weakness, and an inability to stop vomiting when I lifted my head. Given that I hadn’t eaten anything, I knew this wasn’t food poisoning. My doctor prescribed medications to enable me to walk and to stop vomiting long enough to board an airplane.
Forty-eight hours after we got home, an ambulance took me to the hospital after I again awoke to dizziness, weakness, vomiting, a stabbing pain in the back of my head, and an inability to walk. Within an hour of being released, I saw the neurologist, the specialist in MS, who officially told me I had relapsing-remitting multiple sclerosis. It was a relief to hear this since the neurologists who saw me in the hospital blamed a urinary tract infection for what I was experiencing.
First Step Into a Life With MS
An MRI taken that week found two additional lesions, and my doctor concluded I was in the middle of an MS flare. Because the symptoms were quickly advancing, I had three days of steroid infusions to arrest the inflammation while we decided on a disease-modifying medication.
Diagnosis felt like validation. Those first experiences with numbness, vomiting, dizziness, and the inability to stand now had an explanation. Feeling heard was tremendously satisfying. At least now I was believed. That confusing period was, I realized, the connective tissue between my life pre– and post–MS diagnosis.
Getting diagnosed was only the first step, as it is for all of us with MS. Making peace with its permanent uncertainty is never-ending. The changes MS brought to my life inspired me to write a book that’s coming out in March 2020, Uncomfortably Numb: An MS Memoir (Wyatt- MacKenzie). I’m sharing my story so others will know what our lives with multiple sclerosis are really like.