You know, I have about had it with the whole notion of drug trials. Bless you all for doing it, but wow just wow. This has been yet another run around. First, approved of the EKG was good, then EKG good BUT maybe not meeting perfect clinical definition of ALS. Oh, and also had been told you could be in the study at any point in receiving Radicava but now must wait 30 days after starting, as is usual with studies but we were told this would not be the case.
Yes, I know there are reasons for all of this. Yes, I know research is essential to finding effective treatments. This however is our third time on the merrygoround of in/ not in a trial, and getting misinformation after spending much time and energy. The screening was a two hour appointment during which we were told he was as a shoe in.
I also recall the time someone at the U dangled the nuerostim study in front of my husband only to hear at the next visit they had plenty of participants. That was right after they told him he lacked the C Reactive protein for another study after he got pumped on that possible trial.
Nope. Not wanting to waste money re of our time on these, call me selfish. I don't care if the AMX team called and said he could go in without the perfect clinically defined ALS, I told him to skip it and avoid the mess. You're suppose to beg to help science with slim chance of personal benefit, AFTER being told maybe yes no yes maybe?
Bless you who do it, you are the future of the dream of a cure. Me, I am just fed up with seeing him hope only to be let down.