Spoiler: It wasn’t the day I was finally diagnosed. It wasn’t even the day I started treatment. But it was when I realized I had a cause for hope.
Health and wellness touch everyone’s life differently. This is one person’s story. The views and opinions expressed are those of the speaker and do not necessarily reflect the views or positions of Healthline Media.
For 13 years, I had unexplained symptoms like muscle fatigue and pain that worsened with activity. My ability to stand and walk got progressively worse. Strolling through a town, meandering through a museum, and even shopping for food all posed difficulties for me because my muscles weakened more the longer I stood. I was constantly searching for a place to rest.
The life I’d always imagined became simply a dream from my past. Then one day, my life changed for the better.
It wasn’t the day I was finally diagnosed. It wasn’t the day I first began taking a disease-modifying treatment. It was the day I looked back after 3 years of treatment and saw the culmination of renewed physical strength.
I sat in bed watching YouTube videos of Ocrevus success stories the day my neurologist recommended Ocrevus as my treatment. In one video, a woman threw her walker to the side as she walked unaided. In another, a patient listed how his life had changed since beginning the immunosuppressant. These videos gave me something to look forward to — a reason to be hopeful again. Unfortunately, my experience didn’t resemble these videos — at least, not at first.
Ocrevus was still a newer treatment in 2018 when I had my first infusion. On the one hand, I was nervous about receiving a medication that didn’t have a long history of safety behind it. On the other hand, a newer treatment held the possibility of more than just slowing disease progression. Perhaps it could halt progression altogether or even allow for improvements the way my neurologist at the time (now retired) suggested was possible. Recently, my new neurologist explained that while Ocrevus isn’t designed to heal neurological damage, it can calm disease activity, allowing someone to become more active — perhaps even returning to exercise.
I was cautiously optimistic as I walked down my neurologist’s office hallway to receive my first infusion.
I had pseudo-flares after each of my infusions. I’d leave the infusion center exhausted, and the weeks that followed were full of fatigue, weakness, and pain. Thankfully, the pseudo-flares eventually ended. It took 3 years, but I stuck with the infusions because my neurologist believed things would change, and he was the first doctor I trusted wholly.
He was right — my story became a success story, and the day I first noticed the improvement was when my life changed for the better. So much of what I’d given up when MS began suddenly stood before me as possibilities again.
One day, while carrying bags and chairs from my son’s soccer field back to the car, I noticed I was doing something I’d struggled to do for many years. I thought about my daily bike exercise and how I’d slowly increased the distance I could endure. Then I remembered my son’s recent classroom party I’d volunteered at, and it reminded me of all the school activities I used to miss. I even noticed the ease with which I could now cook dinner — a far cry from the struggle it once was. Finally, I saw the sum of all the tiny gains and small steps forward. I was in awe of how far my body had come and the many activities that had slowly returned to my life.
Suddenly, this disease shifted from being something that prevented me from achieving everything I wanted in life to being the reason I am now filled with gratitude. Without this journey, I wouldn’t be able to appreciate my ability to get out of bed in the morning, ride my bike, or walk from the car to the field to watch my children play soccer. Yes, MS has adversely changed me — but it’s given me numerous reasons to be thankful.
While I still occasionally have days and weeks resembling the years I lived undiagnosed, I now have more good days than bad. I can also parent my children and complete my activities of daily living independently. Despite occasional pseudo-flares from the heat and changing seasons, these improvements have stayed with me for 2 years, and I’m hopeful they’ll remain indefinitely.
Living with this chronic disease once came with a progression of symptoms and a decline in physical functioning. But that’s not always the case anymore. The day I noticed a culmination of renewed physical strength was when my world became full of possibilities despite MS. I have so much to look forward to, and I once thought I’d never feel that excitement again.
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Medically reviewed on June 30, 2023
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