In October of 2013 -when I was 35 years old- every couple of minutes, for about ten seconds, that the right side of my face felt 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 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 started. They told me that evening that there were multiple large tumors visible in my scan. With the largest one in the cerebellum (measuring 35mm). What followed was 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 (2017), we have been informed about the 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 started on the 16th of May (2017) and on the 29th of October I was released from the hospital after the last scheduled treatment.
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.
A case-report (scientific publication) has been written about my case.
My last MRI scan (14th of November 2018) was clean. That scan showed that the lymphoma appears to be in complete-remission and also no new active MS inflammation. (The chemo that I received for the cancer is potentially a very potent and long-lasting medication for MS).
In April 2019 we moved to Manila, the Philippines. My next MRI scan is planned to take place in November / December. In June I felt extremely exhausted. After a number of tests, the problem seems to have originated from thyroid dysfunction.
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