Connie’s Story
52 Years of Living with MS: My Journey
My MS story began in 1972 when I was a sophomore in college. During finals week in late May, I woke up one morning to find I’d lost the peripheral vision in my left eye. It was diagnosed as optic neuritis. Thankfully, it cleared up within six weeks, and life moved on without any further issues—for a while.
In the summer of 1975, I got married. My husband’s military service took us to Germany, where we spent five years. In the spring of 1976, I experienced numbness and tingling in my lower left leg, fatigue, and unsteadiness while walking. But, just like before, the symptoms disappeared after about six weeks. Again, life went on.
When I visited my parents in New York in the fall of 1977, my father, a physician, had me see a neurologist. Without the benefit of an MRI or lumbar puncture, the neurologist suggested multiple sclerosis was the likely diagnosis. My father wrote me a note on his prescription pad saying, “The neurologist feels there is a good chance you’ll have no more troubles.” Reassured, I carried on.
By 1979, we were back in the U.S., stationed in New Jersey. That year, we welcomed our first son without any complications. When my husband retired from the Army in 1980, we moved to Illinois, and in 1982, we had our second son—again, no issues. But in 1983, after a severe infection sent me to the hospital, I had my first MRI and lumbar puncture, confirming my MS diagnosis.
Later that year, we moved to Massachusetts. By then, springtime often brought a mix of strange symptoms—fatigue, tingling, and other challenges. Since disease-modifying therapies like the ABC medications weren’t available yet, I relied on prednisone or Solu-Medrol infusions to manage flare-ups.
In 1989, we bought our first home in Newbury, Massachusetts. Life was steady, and I started teaching in Newburyport. Then, in 1994, I began Betaseron as part of the second wave of its release. My neurologist at the time noted my status was “stable or slightly improved.” I tolerated the medication well, aside from occasional fatigue, and continued teaching for 15 years before retiring in 2006 when work became too demanding.
In 2010, I became a patient of Dr. Ellen Lathi at The Elliot Lewis Center, where I felt truly supported. Dr. Lathi was always responsive to my questions and offered practical advice to manage my symptoms. She even involved my husband in my care, helping us both navigate this journey.
Most days were good, but the fall of 2019 brought a setback after a busy season of travel and family weddings. I woke up one day with tingling on my left side—the first time I’d felt that in 25 years. With physical therapy, I regained most of my abilities.
When Dr. Lathi retired, I transitioned to being a patient of Dr. Joshua Katz, also at The Elliot Lewis Center. Like Dr. Lathi, Dr. Katz is incredibly kind and attentive. He always takes the time to listen to my concerns and offers thoughtful suggestions for managing my health. I started Ocrevus infusions and tolerated them well initially. However, after experiencing multiple bouts of COVID-19 and pneumonia, I had to stop the treatment.
These days, I use a walker when I go out, but it hasn’t slowed me down. My husband and I have taken four river cruises and traveled to destinations including Italy, France, and Germany. Traveling has its challenges—Europe isn’t ADA-compliant—but we’ve learned to adapt so I can still enjoy the journey.
Living with MS for over 50 years has been a rollercoaster, with highs and lows. Losing my ability to drive, having to give up teaching, and relying on a mobility device were tough adjustments. But I’ve found ways to move forward, thanks to my supportive husband, the compassionate care at The Elliot Lewis Center, and doctors like Dr. Lathi and Dr. Katz.
To anyone newly diagnosed with MS: Be proactive. Learn as much as you can about your condition. MS doesn’t have to define you or stop you from being your best self.
Life with multiple sclerosis isn’t always easy, but it’s still a life full of adventure and joy.
“Perseverance is not a long race; it is many short races one after the other.” – Walter Elliot
