I am in a research study. The very early stages. I have finished the testing i needed to get the drug which i will get in 2018. I am 25 showed symptoms pretty much since my eyes got worse when i was 18…As far as the study goes I’m not too sure about the name of the drug I will be takin. it escapes me at the moment but I will update as I go through the study and actually get the drug. So stay tuned lol
My wife is just beginning a clinical study at the University of Rochester to determine in Rilutek can help in sca. She also has 7
Always nice to hear about other 7s I’m mostly in Maryland. In that big research facility they have.
What is Rilutek supposed to do? I tried looking it up and the best I could find was maybe it helps you breathe better? But that could be not at all right.
This is also known as Riluzole.
There have been various posts about it. Next to your picture (where you log off) there’s a magnifying symbol. Click on that and put Riluzole in the search box😊xB
I have talked to you before I have sca type 7.Would be interested to see what happens with the new drug your trying.Please keep me informed.Thanks