I'm currently in the Np001 trial. I will have my 5th of 6th infusion the 1st of March.
Unfortunately, I have not noticed any benefits. I took a fall Christmas Eve and fractured my ankle then fell on my church steps about a month ago. Ironically, neither of these falls were ALS related, (go figure). However, it still has not completely healed so I'm wondering if trauma to one's body even if just a fracture can effect the condition of an already precarious disease.
Nikki is correct in one getting benefits of being in a clinical trial, if not only for the experience. At least, in my case it's true. Not only has the medical staff been kind compassionate and very supporyive, but I like getting my FVC checked once a month. Let me clarify that last sentence. I HATE doing the breathing tests but like to know my results on a monthly basis as opposed to every 3 months at clinic. lol.
I am most likely getting a feeding tube next month so I don't know if I would qualify for any future trials.
I did have to sign an agreement that it was understood I would not have access to the drug after the trial. In addition, I wont know if I got the drug or placebo for two years.
In the end it has been worth it. And I would do it again. :grin: