CJ ... yes, I was told that at the end, they would write a prescription for me.
I had a real problem with the Open Label. The first part of the blind trial was fabulous ... my lability was under control, my energy was up and my mental focus was much sharper. Even my speech improved a little because I could put more energy into it.
When the open label started in December, all that went away. The first bottle was like sugar pills ... the outbursts came back, my energy was kaput, everything gone. The neuros kept telling me that there should not be any difference, but did mention that the same thing had happened to one man in the trial previously, who started having weepy spells again when he went on the open label. I'm on my second bottle of open label, and it has been better. No emotional outbursts till this week, when I REALLY, REALLY lost it and just stood and screamed and shrieked at my husband for 40 minutes. It's so crazy ... your mind is soooooooooo embarrassed but your body won't stop.
(Fortunately, I had one breakdown while I was at the clinic trial appt, and scared hell out of the people conducting the trial. So now they believe me.)
Anyway, I think my issue is dosage related. ... or else a matter of quality control at Avenir. I am going to beg the neuro to write the strongest prescription he can. He said he could have it "made up" for me at a pharmacy, although I understand that it is available already by prescription for diabetic neuropathy.
Can't believe insurance won't pay, when it CLEARLY has a beneficial effect on ALS symptoms. What other meds are there that can do even that? I guess that's what this trial is to determine ... if it can be prescribed for other conditions, like ALS
(Can't believe they wouldn't treat your husband for the thrush because he was on the trial. Mine's being treated by another doctor, so I just e-mailed the trial people that I'm taking a new med ..)