The “Short” Story

In October of 2013 -when I was 35 years old- I felt every few minutes, for about ten seconds, that the right side of my face was icy cold as if I was pressing it to a cold window, for these same seconds, I had problems to coordinate my left arm and left leg. When I visited the GP, she referred me to the hospital. An MRI was made, and a small white spot was visible in my brainstem. 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. I subsequently used a different disease-modifying drugs, but none seemed to significantly delay the course of the disease.

Last year, 8 July 2016 I started using Gilenya (fingolimod), this seemed to work well as some symptoms got a bit better and the disease did not appear to progress, until about the end of 2016. I participated in a scientific study about fingolimod in which they made MRIs every 6 months.

On the 20th of February 2017, I had another scan made for this study. I was recalled to the hospital for a clinical scan following the oncology MRI protocol immediately the next day.

Since then a rollercoaster ride has started. They told me that evening that there were most certainly multiple lymphoma visible in my scan. With the largest one in the cerebellum (measuring 35mm). What followed was, and still is, a long trajectory of exams and uncertainty.

Because this has become a very complex story, I have kept a blog where I have written down my story.

On Monday the 8th of May, we have been informed about final diagnosis and the treatment plan. They settled on ultra rare primary central nervous system T-cell lymphoma.
-Update July 14 2017: The hematopathologist told me that the final-final diagnosis was secret option five: An even rarer “lymphoproliferative disorder with oligoclonal T-cell expansion”, you can read about it in my blog post of that day.

Treatment has started on the 16th of May and on the 29th of October I was released from the hospital after the last scheduled treatment. The next MRI scan is planned for the 12th of Januari 2018.

The first part took place in the Jeroen Bosch hospital in ‘s-Hertogenbosch, the second part took place at the Spaarne hospital in Hoofddorp, and the third took place in the VUmc in Amsterdam.