Me, a few months ago.
This is going to be a rather long story about my health and the current events.
My first MRI, showing a lesion in the brain stem (the white spot just off the center)
I expect that not everybody knows about my history with multiple sclerosis, so first of all, I will tell a bit about that.
In October of 2013, I had, what I found out later, were called ‘paroxysmal’ symptoms. Every few minutes, for about ten seconds, the right side of my face would feel icy cold as if I was pressing it to a cold window, at the same time, I had problems to coordinate my left arm and left leg. When I visited the GP, she referred me to the hospital.
Later an MRI was made, and a small white spot was visible in my brainstem. I remember that time of uncertainty. With me wondering “what is this spot,” “I hope it is not cancer,” “it is probably multiple sclerosis (MS).” MS is a disease that my father has had since I was almost two years old, and my sister has had for more than ten years.
The diagnosis was not easy to make; a lumbar puncture was made, but it showed nothing. The only thing to do was wait, a new MRI scan was made, and in August 2014 the diagnosis MS was finally made. The MRI showed new lesions in different places. From then on symptoms did get worse slowly. Balance got worse, speaking wasn’t as fluently anymore, my cognition became less, and I was more tired. Progression was steady, but not very fast.
Signing the UWV documents that state that I can’t do my work anymore.
There were periods when things were better, and periods when things were worse, but most of the time I was noticing a slow but steady decline. I tried different types of DMTs (disease modifying treatments), there is no cure, but there are medicines on the market that slow down the progression in some patients. They didn’t seem to work. After a long trajectory with the company doctor and the UWV (Employee Insurance Agency), I was found to be unable to work, since then I significantly reduced the hours I worked at the Radboudumc.
New scans were made, and in July 2016 I switched to Gilenya, what they call, a second line treatment. These medications are often more effective but somewhat riskier. Gilenya, a daily pill, was still relatively ‘mild’ with risks ranging from early heart problems (I had to be monitored in the hospital for a day when I started) and then some increased risks for benign skin cancer, and a minuscule risk for malignancies (between 1/1000 and 1/10000 patients). Since I didn’t expect to be on this medication for long, I didn’t ponder on these possible risks for too long.
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