Old 11-05-2018, 10:17 PM #1 (permalink)
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Default B12 Injections

Hi all! I have been busy renovating my daughterís newly purchased apartment (in a strictly advisory role) and havenít been posting much.

But I would like to draw your attention to positive results I have had injecting B12 daily. I bought some insulin needles and I inject once a day or so. I am able to buy injectable B12 at the local pharmacy.

A quick google search will point to many articles about the benefits. This is one from the NIH but I admit I am not clear on the plot line. I know a number of people on the site could make sense of it!

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2941760/

It gives me strength that I lose after missing a few days. Not sure about progression but that extra strength makes it feel like a reversal.

I hope this helps and we can share notes if it helps anyone else.

Ted
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Old 11-05-2018, 10:24 PM #2 (permalink)
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Default Re: B12 Injections

Ted, did you need a prescription for the B12? If so, did you get the prescription from your neuro or your pcp? What is the dose?

And thank you for posting this!
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Old 11-05-2018, 11:50 PM #3 (permalink)
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Default Re: B12 Injections

Hi Ted,

I read through the article. On page 16, their conclusion is “Treatment of ALS with vitamin B12 has been attempted without success [30]. It therefore appears that the simultaneous occurrence of NMD/ALS is by chance alone. Vitamin B12 therapy in ALS/MND is unsuccessful.”

The article does underscore the importance of getting a thorough medical evaluation as part of the evaluation for someone with suspected or possible ALS/ MND, and this includes measuring B12 levels.

B12 deficiency can present with neurological signs and symptoms including something called subacute combined degeneration of the spinal cord. B12 deficiency can also trigger all sorts of abnormalities affecting red and white blood cells.

It is known there is a huge placebo effect when people with normal B12 levels inject B12 for fatigue, though the benefit usually doesn’t persist. It’s possible there could also be a placebo effect giving it to people with ALS and normal B12 levels.

That said, there are few side effects to B12 supplementation. It is a water soluble vitamin, so your body will eliminate what you don’t need.

B well.
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Old 11-06-2018, 12:24 AM #4 (permalink)
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Default Re: B12 Injections

and then there's this more recent, more positive study

Ultra-high dose methylcobalamin (E0302) prolongs survival of ALS: Report of 7 years? randomised double-blind, phase 3 clinical trial (ClinicalTrials.gov NCT00444613) (P7.060) | Neurology

Which concludes with
The present study demonstrated for the first time that ultra-high dose methylcobalamin can significantly prolong survival and retard progression in ALS if administered early.
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Old 11-06-2018, 12:31 AM #5 (permalink)
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Default Re: B12 Injections

Shiftkicker - no prescription but behind the counter at London Drugs. I got the needle sets at Regency.

Karen, that is disappointing news but I didn’t necessarily think it was a cure, just an aid. I also heard that over time your kidneys get better at filtering out the B12. But if it helps for now...
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Old 11-06-2018, 12:32 AM #6 (permalink)
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Default Re: B12 Injections

Just saw your posting Greg - thank you!
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Old 11-06-2018, 12:41 AM #7 (permalink)
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Default Re: B12 Injections

A Japanese trial is ongoing, so if any dose is worth trying, maybe it's the one the trial is testing since I believe the same group did earlier trials.
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Old 11-06-2018, 03:44 PM #8 (permalink)
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Default Re: B12 Injections

Ted,

I've been taking B-12 for about 15 years. I was diagnosed with fibromyalgia and my GP recommended injections. She sold it, preservative free, at her office. It gave me a lot more energy. I continued taking it by injection off and on.

When Mayo diagnosed me they did a B-12 blood. My level was about 10% over the higher range and they actually told me to stop taking it. I ignored them but switched to sublingual 6 mg. once or twice a day and it kept my level high. So I've been taking it off and on for 15 years. When I stopped, I would drop to low to mid range of normal. Now, even with the sublingual I stay at about 10% over the high range. I've had several breaks from it and my energy level drops. I don't care if it's the placebo effect or not, I'm still taking it. Two things I will not give up are curcumin and B-12.....oh and medical cannabis.

When I went back to Mayo with the Japanese study the answer I got was "you're not Japanese."

That's when I started working with my local neurologist who believes in supplementation and has had success with it.
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Old 11-06-2018, 04:00 PM #9 (permalink)
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Default Re: B12 Injections

I took it for a while and so did my sister. Methylcobalamin and I do think it should be that as that was what showed benefit.

Who knows if it helped slow anything. Like riluzole and radicava that is all it is supposed to do. I stopped when I went through a denial phase and never resumed. My sister stopped because it was a burden
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Old 11-06-2018, 07:29 PM #10 (permalink)
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Default Re: B12 Injections

Ted, I asked at my local (small) pharmacy and they told me I needed a prescription for injectable. I may have to trek up to the place you visited. What amount are you taking?

My impression is that B12 potentially helps with reduction in fatigue but is not considered a "treatment" for MND in any way. I am willing to try anything to gain even just an extra hour or two weekly not completely flattened by fatigue/brain fog.
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Old 11-07-2018, 10:45 AM #11 (permalink)
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Default Re: B12 Injections

I am taking about 1ml per injection. And one injection every day and a half or so. Kim, when you were injecting, how much were you taking? My dose is not based on science but rather what my nurse was administering when I was infusing Edaravone.
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Old 11-07-2018, 01:52 PM #12 (permalink)
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Default Re: B12 Injections

5 mg. per day. I believe the Japanese study was 25-50 mg. twice a week.
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Old 11-07-2018, 01:56 PM #13 (permalink)
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Default Re: B12 Injections

Ted how many mg are in that 1ml?
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Old 11-07-2018, 02:04 PM #14 (permalink)
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Default Re: B12 Injections

If I recall correctly it was 50 twice a week with an option for 25 daily. My sister did daily I did twice a week. Are you using methylcobalamin Ted?
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Old 11-07-2018, 02:38 PM #15 (permalink)
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Default Re: B12 Injections

Tillie, there are 1000 mcg per ml or 10,000 mcg in the bottle. I inject 1 ml at a time so 1000 mcg.
Nikki, it is Cyanocobalamine. I am using Sandoz DIN 00521515.
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