By Chantal Milne – on the Canadian MS Progression Cohort
When I found out I was pregnant, I eagerly downloaded two pregnancy apps, bought three books on the subject and made it my morning ritual to get up and google, “Day X of pregnancy.”
The amount of information available to us these days is vast to the point of being overwhelming sometimes. When it came to the progress of my growing baby, I wanted to know everything. Every. Last. Detail. I’ve always been a curious person, and at a certain point, I started thinking about how stark a contrast the progression of my pregnancy was in relation to my MS progression. There are no apps to tell me how I’ll be feeling next month with MS, that’s for sure. There are the obvious differences, like getting to meet your wonderful new baby versus finding out you have an annoying scary disease, but this idea of progression and how we know so much about pregnancy, and so little about MS, it keeps me up at night sometimes – I need to know more.
MS is a journey I wouldn’t wish upon anyone. Receiving the diagnosis can feel like an uphill battle, once you know, then what? I have a great health care team, but not one of them can tell me with certainty how my disease will progress, or whether or not I’ll be able to walk into the room and present a candle-lit birthday cake to my daughter on her fourth birthday. I’m optimistic and I’ve got my disease under control, I think. There are just too many unanswered questions when it comes to MS disease progression.
I’ve found ways to deal with the anxiety of not knowing how my MS will impact me in the future, but I look at my daughter and I wonder how will I answer the questions she has? What if we knew what causes MS? What if someone could tell me how to stop my MS from progressing? What if someone could tell me if I would be walking in five years? Would that change how I live my life now?
When it comes to MS, for me, not knowing is half the battle. That’s why I’m so excited about the MS progression study results. I can’t prevent the onset of MS in my life, it’s too late for that, but what if in 10 years we can stop it from progressing? What if we knew why my MS is different from the guy down the street? What if we could stop relapsing remitting MS from turning into secondary progressive MS, or better yet, end MS altogether!
I am hopeful, I am confident and I know that we can do this. We’ve got the world’s best MS clinicians and researchers working to answer these questions. By the time my daughter is old enough to ask me what MS is, maybe – just maybe – there will be an answer. That’s where I want my MS journey to go, and the MS progression study is giving me a road map to get there.