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