Sue’s Story

Sue shares her multiple sclerosis story of diagnosis, disbelief, anger and acceptance.

My journey with MS has gone from the shock of the diagnosis to embracing life where the only limitations are the ones I impose. It began as it begins for most people with MS, symptoms that cannot be explained by other causes. In 2002, I was referred to a neurologist after my urologist couldn’t find any physiological reason for my recurrent UTIs.

I will never forget that day. The neurologist reviewed my complaints, performed some routine tests and presented me with a lab order for an MRI of my brain. Until that point, I assumed I had a problem with a compressed disc. I asked why he would order an MRI of my brain, and he said he thought I had MS. I disagreed, and to appease me he ordered an MRI of my spine in addition to my brain. The MRI and a subsequent lumbar puncture confirmed I had multiple sclerosis. 

I was in disbelief, so I sought a second opinion. In the end, my doctors confirmed that not only did I have MS, but I had likely had it for 20 years, which explained years of tripping, fatigue, heat sensitivity, vision problems, chronic UTIs, and numbness.

I was angry. I thought I had done everything right: I exercised and maintained a healthy diet and lifestyle. At the time of the diagnosis, my husband and I had been married for 20 years. Our sons were growing up and would soon be embarking on lives of their own. We were getting close to “our time.” I had envisioned that we would be free to do whatever we wanted, not that we would be tied down by a disease I felt I didn’t deserve. My husband has always been more accepting of my diagnosis than I have. He realized long before me that MS couldn’t tie us down unless we let it, he has been my biggest advocate.

The persistent struggle I face is accepting that I have a disease that has no cure, that I am not as independent as I would like, and that I need help. Nonetheless, while my future is not what I had envisioned, it can still be rewarding.

In 2016 I decided I needed a neurology practice that focused exclusively on MS. The general practice I was at was not sensitive to what I was going through beyond the physical symptoms, so I made the decision to travel from our home in Western Massachusetts to the Elliot Lewis Center.

Dr. Katz has been helping me to embrace acceptance. He understands that it is a process I need to work through, and he also has helped me to understand that I need to make sure the process doesn’t cause setbacks. One of the hardest decisions I had to make was when to retire. I had a long, successful career, which, while satisfying, was becoming more stressful and taking a toll on my MS. In March 2021, nearly twenty years after my diagnosis, I retired ready to move on to the next chapter of my life with MS.

Today I look back to the day I found out I had MS and have found that the life I envisioned can still be realized, just in a different way. Since my diagnosis I completed my master’s degree, danced with my sons at their weddings, traveled with my husband, and completed a successful career. Now I look forward to the next chapter of my life. I know there may be challenges in the future, but I am a part of my treatment team, my voice is heard and respected, and together we will get through it.