Very interesting Asor.....I hope this works out for you.
One thing that I find a little confusing is that she has told you to start taking NR if she is considering you for the trial.
I would have thought for the trial, they would want to start on a the B3 related compound (which I suspect will be NMN) without anything else from that compound family clouding the issue?
Either way it sounds like she has already got confidence in the NR doing you some good, which is great for you and your health issues
Good luck.
Yes that's a bit confusing and i was surprised as well...but let me clarify:
the suggestion about trying out Nicotinamide Riboside came from the neurologist who visited me yesterday, who's a clinical
doctor and the suggestion came after i asked directly about an "unofficial" opinion about whether it could be a good idea to try NR by myself, so it's unrelated to the possible future trial. I literally asked while walking out the door and she told me i can try.
BTW, just a few minutes a go i received the answer from the researcher at Cambridge, and this is what he told me about the current situation:
The organization of a trial is very complex and requires a lot of time, he can presume that it might start this late autumn, but he's not sure at this moment.
The trial WONT be with nicotinamide riboside because it's too expensive to involve a large number of patients.
Same for the trial that is being organized by the Finnish group.
-Either them and the finnish will be using other precursors of NAD, that in theory should work in the same way.
The Cambridge group is oriented on Nicotinnamide, the Finnish group on Nicotinic Acid (i hope i translated it correctly, he wrote "Acido Nicotinico" in italian).
Either substances have already been tested on humans, which is another reason why they use them instead of NR, but have some disadvantages: Nicotinic Acid is more toxic, Nicotinnamide is less toxic, but initially it could have a contrary effect in respect of what it is wanted to achieve.
I mentioned Chromadex to him, he told it's one of the producers of high quality NR.
He said he CANT encourage me to try it by myself because i would be without medical control (and he said that the effects of NR on humans is unknown yet), the other reason is because to understand whether there is some improvements, we need "objective parameters", my subjective feeling wont be enough to say whether it works (i obviously agree with that, makes sense).
Then he says that the pathology they want to trial is exactly the one i have, and that i have very high probability of being chosen.
Finally, he tells me to wait a little and eventually coordinate the next moves with the neurologist that visited me yesterday (which was suggested by him).
That's it.
Finally he told me to feel free to ask any other questions, so if you folk have any idea, give me some hints, they guy is really approachable and willing to help.
At this point the questions i have are:
-how can they test "objective parameters" to figure out whether the NR (or substitute) is efficient? If this in not overly complicated or invasive, i could have it tested myself in some local labs.
-Another thing that confuses me is: Nicotinamide Riboside is not tested on humans so they rather use some other similar compounds (also due to the cost). But isnt this the point of doing an human trial? Somebody has to bite the bullet i guess, might as well be me.
In conclusion, im not sure yet whether to start experimenting myself with NR, as you say this might cloud the situation regarding the future official trial, even though the clinical doctor seemed to be rather positive regarding NR and the researcher didnt really completely shut me down either on that idea.
He didnt say "no that's crazy dont even think about it" but "he cant really encourage me", so, reading between the lines, it might not be a totally bad idea to try NR.
On the other hand, i dont really have "urgent" difficulties with my condition, so waiting some months is not going to change anything for me, it's a very long term issue, slowly progressing and developing.
What is concerning me at the moment is that they might go with less effective compounds for economic reasons, while i'd rather spend some money myself if NR is a better overall solution compared to the other NAD precursors.