An image from a brain MRI of a young multiple sclerosis patient. The white spots correspond to demyelinating lesions. (Credit: ISM/SOVEREIGN)
When I saw my MRI results last spring, there were new white spots that were not visual before. Thankful my neurologist ordered a second MRI to follow up on these white spots. Sure enough my inclination was spot on–no pun intended. I have developed two new and larger lesions on my C3 section of my spinal cord. I was not surprised by the results of the second MRI in November because I felt changes and sensed my disease was progressing.
How so? For one, the tremors were becoming ordinary and most common and they were visible to others. I was having issues swallowing and walking. My balance was off. I am fairly in tune with this disease so I told my neurologist that my medication had definitely reached its limits and I needed a new course. We went with an IV infusion (Ocrevus) given twice a year after the first dose was split in two with two weeks in between each infusion.
After the first doses, I stopped having tremors, my swallowing ability was better, and I felt like I had the energy and drive to meet each day. Yes, it takes a whole day for prep, infusion, and post care, but it is worth every penny of the cost. This drug has made a difference in how I function and live my life. Thankfully, insurance covers the $80,000.00 plus for each infusion.
I share this because sometimes I sense MSers are reluctant to explain what is going on in their bodies, to ask for a medication change, or to face the reality that one prescription has stopped working. Living with MS, I understand it is incurable and progressive, but if there is a way to live more fully, we need to ask for it. We live this disease and so do those in our closest circle!
MS Fortunate 