I had an appt with my neurologist today and we went over the MRI I had a couple of weeks ago. This one was compared to the one that was done prior to my entry into the clinical trial. I have many new lesions.
So not only did I not get a departure debrief but when asked for information about the brain MRIs, the clinical trial neurologist told my neurologist there had been no change in my MRIs. I do believe that was misinformation.
I will most likely be going back on Betaseron soon.
I am very unhappy with the clinical trial doc who conducted the site where I was enrolled. I am not sure what to do about all of this. I certainly hope that Opexa is reading this because they should be....
Yet another and perhaps THE most important reason why any "furtherance (for lack of a nice big word here)" of Tovaxin talks should include OUR input.
It sure looks to me that study protocol was violated, at worst--fudged at best--in WAY too many cases here. From that one group in the Deep South who lost their chance due to the staff screwing up--to this...
Cheryl, I really hope we can find someone to take action for you. It's my understanding that if any of us, during the trial, spiked a lesion, we were supposed to be suspended and treated before getting the green light to proceed.
If there'd been a HUGE cash incentive for neuros and staff to ignore the protocol and push us through the maze regardless, I may have understood this mess. But they only got about $280-ish for each of us (it was right there on my special color-coded check-in form in the "insurer" section--so I don't think this could possibly have been priviliged information).
So what was the reason for this downright criminal and unethical decision not to treat you? Any chance you'll ever know?
I need to send you a gift certificate for something decadent. Chocolate or something!