This Is MS Multiple Sclerosis Knowledge & Support Community

Hi. Many years ago when I was newly diagnosed, I heard a lot about MS and b12 injections. Now I never hear about it, Does anybody still take them?

burntsienna wrote: ↑Wed Sep 23, 2020 7:27 pm Hi. Many years ago when I was newly diagnosed, I heard a lot about MS and b12 injections. Now I never hear about it, Does anybody still take them?

I take sublingual methylcobalamin tablets. They have methylfolate and B6 in them too.

Do they help?

re hearing about it years ago, i had a long term b12 deficiency leading up to diagnosis (in early '06), so for ages i wanted to blame everything on b12. my own problem was insufficient dietary intake because i was an irresponsible vegan for too many years. gradually, after dx, i learned about all my other nutritional issues and started working on those too, and stopped obsessing on b12.

if your serum b12 level is not deficient or borderline, but decent - let's say no lower than 500 pmol/l to be on the safe side - you shouldn't need injections and i wouldn't expect them to help.

when i was at my most obsessed about b12, i avoided injections because i was paranoid about cyanocobalamin, and that was the form locally available for injections. so i was taking daily 1000 mcg megadoses (RDA is 2.4 mcg) of methylcobalamin, using sublingual strips which are just as good as an injection for getting the nutrient into your bloodstream, bypassing the gi tract.

nowadays, i just get whatever b12 is in my food (reasonable) and my multi (very high, (and the previously dreaded cyanocobalamin for that matter)). last time i had my serum level tested i think it was somewhere in the mid 600s pmol/l.

fwiw, an interesting list of b12 food sources:
https://www.health.harvard.edu/staying- ... -b12-foods

re whether it helps, for me what b12 helped with was my most obvious deficiency symptoms. i had classic b12 deficiency symptoms like weakness and numbness, and spinal cord damage including an active c spine lesion complete with lhermitte's sign. haven't felt that one in well over a decade now. i did some permanent peripheral nerve damage though, the old stocking and glove neuropathy, which probably can't be laid at the door of b12 alone. i just didn't learn about the other contributing factors until it was too late :S

for 15 years' worth of related light forum reading: viewtopic.php?f=27&t=18560

burntsienna wrote: ↑Wed Sep 23, 2020 8:14 pm Do they help?

I became B12 deficient from ~ 10-12 years of drinking 3-4 cups of green tea per day. EGCG inhibits folate. I was folate deficient and had high homocysteine. Folate is used to recycle spent B12 back to the active methylated form. The sublingual B12 was critical to restore my folate and B12 levels to normal. Homocysteine also went down. Methylmalonic acid was never high so that would have been an unreliable indicator. Unfortunately, it progressed to the point of subacute combined degeneration and a 2.75" lesion on my c-spine. I wound up in the hospital because I couldn't move my legs and the docs thought that I had experienced a heart attack due to the effects of the high homocysteine. Also unfortunate is that permanent damage was done.

To answer your question, when I was B12 deficient, taking B12 was like having the Sun burn off the the pea soup of mental fog. Yes, it helped tremendously.

However, there is such a thing as too much B12. There was a time where I felt like I couldn't get enough B12. I experimented with taking 20 mg/day. After a week I found that it made me agitated and unbalanced.

Now, I just do a maintenance dose though I can tell a difference if I don't take it for a few days.

One of the things that I have been doing over lockdown is family history research. I always knew my father's father (never knew him) had Pernicious Anemia (a lack of "intrinsic facteur" which is the thing that allows the stomach to absorb b12. But I have found out that also his mother had it and that it runs in families. And also that all auto immunity is related. So I just wonder how long I may have been ignoring symptoms as "oh its just the MS" that could be helped by other things. The MS has certainly taken a turn for the worst. I think I ignore so many things as "just MS".

if i remember correctly, in my case i believe PCA tests were among the first the docs ran when doing the differential dx for ms.
PCA being parietal cell antibodies and parietal cells being those that produce intrinsic factor.

it has been so long since i looked at b12 research on any kind of regular basis, that i believe this is the first time i have come across a study reporting that sublingual b12 supplementation is superior to intramuscular injection

Comparison of sublingual vs. intramuscular administration of vitamin B12 for the treatment of patients with vitamin B12 deficiency
https://link.springer.com/article/10.10 ... 18-00613-y
"... This is the largest study that documents therapy with SL preparations of VB12 sufficient and even superior to the IM route. The SL overcomes the challenges of IM injections and should be the first line option for patients with VB12d."

also:

Oral Vitamin B12 Replacement for the Treatment of Pernicious Anemia
https://www.frontiersin.org/articles/10 ... 00038/full
"... We found that oral vitamin B12 replacement at 1000 μg daily was adequate to replace vitamin B12 levels in patients with pernicious anemia. We conclude that oral vitamin B12 is an effective alternative to vitamin B12 IM injections. ..."

so if 1000 mcg plain old oral b12 is good enough even in those with pernicious anmemia, presumably 1000 mcg sublingual would be more than sufficient, and a follow up test would likely be worthwhile to double check, and to guard against any consequences of excess.

also interesting:

Pathophysiology and laboratory diagnosis of pernicious anemia
https://link.springer.com/article/10.10 ... 016-8841-7

(never saw that one before either - was published years after i stopped reading up on pernicious anemia! i never realized it was the eventual result of a chronic preceding issue)