The final result

It would take a few days to realize. Out of the dream…
A few days ago came the press release from Biohaven itself that the drug is unfortunately ineffective. I was a bit surprised about the timing, we in Europe are a bit behind. However, I was not surprised by … >>>>>>>

Hope dies last

Since yesterday my trial is over. When I think back how much we expected in the beginning and what hopes we had!
Now one year is over and I have no idea if it was placebo or not? And whether the drug is doing any good at all. In the … >>>>>>>

Travel plans

I am making preparations. I’m going to Bavaria tomorrow and I’m very happy. I was never homesick, for example when I left my birthplace, but I am now. Although I can say that I already have quite good here in Hessen, I have met some great people. And some strange … >>>>>>>

What does science know about myoclonus?

Actually, we all have our problems and fears with this. To understand all this a little better, I have looked around. My information is based on American sources, so it may not be complete. Please feel free to make additions / corrections. The information is based on the pages of … >>>>>>>

Changes

Since I have participated in this trial, I observe myself differently. Now I am afraid of any deterioration, because it would (probably) mean placebo.

In general it is very difficult to say whether I feel better or worse, because it is determined by the shape of the day and the … >>>>>>>

Here we go – another stage

Here we go – another stage
Last week on Wednesday I received the mail that Biohaven considers me suitable to participate in the study.
As final start date we had agreed on the 23.07.20. So I am the last of our happy WhatsApp group to start the study, with a … >>>>>>>

The Magic

I have the studydrug. Finally. Now, new questions are coming up. Is this the medicine or a placebo? Is everything coming too late? A year ago would have been good. Because, according to the study doctor, at best it slows down the progress or if everything is going super well … >>>>>>>