The unpredictability is the hardest part of living with MS

Leigh Anne Nelson wears the jersey of her favorite team, the Kansas City Chiefs. (Photos by Brett Nelson)

Day 15 of 31

This is Leigh Anne Nelson’s story:

During my first experience with what I believe was an MS-related illness in 1996, I had numbness and loss of strength in my left leg. I was moving, and attributed my falls to clumsiness and the clutter associated with packing up my apartment. I also noticed a decrease in sensations associated with sexual activity and defecation. 

I was young, naïve, and the thought of having a chronic debilitating illness never entered my mind. I didn’t tell anyone about my symptoms because to me, they were just weird, a little embarrassing, bothersome but not enough to prevent me from getting things accomplished. I thought I was just too busy to take the time to go visit a healthcare professional. I was finishing my residency training as a pharmacy practice resident, moving to another state, and starting a new job at that time.

Leigh Anne Nelson enjoys a beverage while on a cruise.

A work colleague finally insisted I seek medical attention after I fell trying to get into her car and told her what was going on with me. I spent a few days in the hospital and received a diagnosis of acute transverse myelitis. I was satisfied with this explanation for my symptoms — and with my predicted full recovery within a few months.

Over the next 18 years, however, I continued experiencing unexplainable neurologic symptoms. I was no longer young and naïve, and knew something was wrong with me. But I’d never let myself think about having a serious illness, until I did at the most inopportune time.

I had a panic attack during an MRI scan and not because I’m claustrophobic. I am a “difficult stick” and it took multiple attempts to get an intravenous line inserted before the MRI. I convinced myself I had cancer, a brain tumor. After being hospitalized once, evaluated in healthcare systems in four different states, visiting at least six different healthcare providers — from general practitioners to neurologists — and undergoing a battery of tests, I finally received the correct diagnosis: multiple sclerosis.

I thought I would feel liberated knowing what was causing my symptoms, and relieved to no longer face the unknown. To my disappointment, I felt neither. The more I learned about MS and its unpredictability, the more frustrated I felt.

Now, I am learning to live with MS. I’m learning how to manage its unpredictability and its impact on my daily life. Still, there are days when I would prefer the frustrations of the past unknowns to those associated with the unpredictability of my future.

In recognition of Multiple Sclerosis Awareness Month in March, the MS Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by MS, written in their own words. Follow us on Facebook, Instagram, and Pinterest for more stories like this, using the hashtag #MSSpotlight, or read the full series.