Ulf
Member
- Joined
- Jun 12, 2019
- Messages
- 10
- Reason
- DX MND
- Diagnosis
- 08/2018
- Country
- US
- State
- CA
- City
- San Diego
Hello Everyone, I wanted to write about my trial experience. I was part of the cytokinetics phase 2 trial. The drug helped me to retain my muscles and increased my strength for the 22 weeks. Sadly afterwards I lost some muscles during flush out period. I'm slow progressing. I'm now on the arimoclomol study. I believe I'm getting the real drug as when I take it my fasciculation die down to like 5 percent. They are involuntary so I don't think placebo effect can cause this. I also feel better when I take it and haven't lost anymore muscles so far.
I also heard from the chief investigator that she talked to the people from Nurown and the FDA wants them to complete the trial.
I also heard from the chief investigator that she talked to the people from Nurown and the FDA wants them to complete the trial.