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BlueandGold

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From the NEALS site:

"Ultra-high dose methylcobalamin (E0302) prolongs survival of ALS: Report of 7 years’ randomised double-blind, phase 3 clinical trial ".

I won't post the whole story but you might want to read the article on the site. Not sure if our docs would give us twice weekly injection of B-12 or not but it sure did sound promising and doesn't have to be FDA approved.

Vince
 
The US doctors seem to be,at best, lukewarm on this. The benefit apparently only showed if started within a year of symptom onset
My sister did high dose injections daily early in her disease. I don't feel as if it helped her. Her progression at that time was fast. It slowed down later a good amount of time after stoping b12. That said the injections are easy to give so you would just need someone willing to prescribe and a source. The standard b12 given in the US is a different form. I don't remember how my sister got hers. I know it was not easy
 
I should add that as we know ALS is many different diseases my sister is, of course, c9 FALS as am I. What helps/ does not help us may be different than those of you with different forms of ALS
 
Like Nikki, we have FALS (ours is TARDBP). I seem to recall my Mom having B-12 injections at least some of the time she was progressing but I do not remember it being of any help with the ALS. Oh, that it could be that simple.
 
Well Fudge! Thought it might at least be something to try since the study group was so large (over 300 participants). I wish NEALS wouldn't even put this stuff on their website if there is no overwhelming evidence that it helps.

Vince
 
I think what they said at the MGH symposium in May was that they were trying to get more information from the study doctors. I have clinic in a couple of weeks. If they say anything about this I will let you know
 
Thank you so much Nikki.

Vince
 
They've been doing studies in Japan for years. I gave Larry a chewable daily methylcobalamin before it got burdensome; he was anemic anyway due to a titanium valve that liked to eat up his RBCs. Can't say if it had any effect. The Bs like to be balanced somewhat so he took a B complex also.
 
i take b-1 and b-12 orally daily and have no idea if it is having any effect! does b-12 have to be injected to be effective? chally
 
From what I read, they gave patients injections of B-12 of 25-50 mg twice per week. The oral supplement that we buy are only about 2,000 mcgs, which is much, much less than mgs.

Vince
 
We used 5000mcg. I doubt an oral form is going to change the course of the disease, as the dose is much less and the form less bioavailable, but I tend to think in terms of combinations and symptoms anyway. I don't know that I would use B1 unopposed, though.
 
Note that this study and the earlier Phase II specifically used methylcobalamin. Not just 'any' B12.
 
Yes, that's the form we used and that everyone should, if you are going to try it -- the inferior one (cyanocobalamin) is most often used in vitamin complexes, though. I believe it is cheaper to make.
 
My wife had found this last week. I read it and noticed that breathing issues disqualified individuals from the trial which seems to be the case in most trials. I was very discouraged and stopped reading. US doctors are not I intrested in anything that the pharmaceutical industry won't make big money off of.
 
Disagree. There is an exercise trial ongoing. No money there. There is an inosine trial. Inosine is over the counter and I think fairly cheap. They trialed creatine in the past otc vs tamoxifen ( generic). They are trialing mexilitine ( generic)
There have been a couple of diet trials

Do the qualifications for trials need to change? Absolutely. That is less about money than the need for good biomarkers
 
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