The First Year with MS
June 24, 2016 5 CommentsCategory: MS
Tags: Fundraising, MS, MS society, MS society junior board, Tysbari, WAlk MS, autoimmune, autoimmune disease, inflammatory disease, ms advocate, ms awareness, ms research, multiple sclerosis, multiple solutions, national MS society, optic neuritis, vision loss
The first time I ever laid eyes on my MRI results I thought I was looking at a Christmas tree lit up with ornaments. Only those ornaments were lesions on my brain and I counted nearly 13 of them. From that day forward I knew that I would spend the rest of my life managing multiple sclerosis…
I spent the first year with MS getting it under control with regular IV steroids both to regain my vision and also as a short term fix so I could safely get pregnant. Initially after diagnosis, my doctor wanted me to start a medication that I would ultimately be on for at least a year but I knew that would mean that our dream of having a child would be put on hold and I wouldn’t let that happen. Since day 1 with MS, I decided I would not let it control my life or keep me from doing the things I wanted to do, and this was certainly no different.
While I was able to protect myself from new lesions while trying to conceive, I knew that I would be at risk for more once I was carrying the baby and could no longer take any medication. The reward, of course, outweighed any consequences in my mind and becoming a mom remained my priority. The best part of being pregnant is that all symptoms of MS dissipate and I felt totally normal for 10 months. It was the greatest gift but I knew that it was short lived and soon enough I would be back to my new life of worrying about MS.
On the day my daughter was born, I started steroids again hoping to fight off the relapse that seemed inevitable after her birth. Instead of starting a medication right away, it was really important to me to breastfeed (if even for the first 3 months) and the steroids essentially “covered” me so I could do that. Luckily, only manageable symptoms from the past were back, like blurred vision, numbness and tingling, after her birth so I thought I was in the clear. But, my recent MRI showed new lesions on both sides of my brain – news you certainly don’t want to hear. That day I felt depleted for the first time in months. Life was just starting to feel wonderful again – we had a beautiful, healthy baby who made me happier than I’d ever been. The last thing I wanted to hear was that things could go down hill. I decided to take that day to be sad, and picked up the next day where I left off.
Now I’m about to begin the next step in this journey where I proactively begin to stop the progression with Tysabri, a new drug that’s supposed to be the best (more on this later). This drug will hopefully get my MS under control, so I’m optimistic. I’m also nervous because I don’t know how my body will react to it. I plan to be on this drug for 12-18 months so we can fully gauge the effectiveness of it and monitor the results. My next MRI is scheduled for December 2016 so that will be my strongest indication on whether any new lesions have formed. Stay tuned..