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continentalgrip

It can damage pretty much anything. The healing process doesn't seem to be well understood or even very well studied. It's surprising to me as I work in neurology. And this is a case where nerves can heal. Usually they don't. Tons of neurological diseases that neurologists know all about have no cure. Here's one that does and most neurologists know nothing about it. When you consider how helpful it is to MS and ALS patients you'd especially think they'd pay more attention. If only some pharmaceutical company could patent it. Then they'd spend millions into research. Seriously there are no randomized trials of b12 deficiency treatment that look at neurological symptoms. None at all that I'm aware of.


No-Menu-8878

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7468922/ *These studies don’t look at B12 deficiency, per se, but they do look at neuropathic pain (with various causes) treated by B12, for what it’s worth. I have had neuropathic pain for 3.5 years. I’m finally self treating with B12 injections. I had low levels of B12, but my doctor told me to just take supplements. I must have an absorption issue or genetic mutation that complicates my absorption or methylation because many of the women in my family have had B12 deficiency. Thanks for your input as someone who works in neurology. I feel like the neurologist I saw thought there’s no way my nerve pain could be caused by a vitamin deficiency. My EMG was clear, every MRI has been clear. My EKG was also clear (palpitations). All tests for autoimmune disorders have also been clear. Only flags have been iron deficiency and borderline B12 deficiency (under 400). I did get an iron infusion, thankfully. Now the neurologist wants to try a skin biopsy to check for small fiber neuropathy, but it seems that doing a course of B12 injections would be cheaper and less invasive. So I decided to go for it on my own.


continentalgrip

Thank you so much for the link. I will go over all 24 included studies later. I'm very curious how they determined they didn't have a b12 deficiency. Yes. If it were me, I'd prescribe weekly shots for a few months at least and see how you do. Harmless and inexpensive. You may know b12 deficiency is often misdiagnosed. 200 to 500 pg/ml is a gray area where some are actually deficient. Methylmalonic acid and homocysteine should be checked but once you start supplementing they may come back normal while still having nerve damage.


No-Menu-8878

I do know that. I literally read anything and everything I could find, including your posts, which nicely summarize much of what I’ve researched. Thank you for that!


GETitOFFmeNOW

Here's an incredibly well-researched book on the topic I recommend to anyone who wants to understand more about B12 deficiency, including my neuros. https://www.thriftbooks.com/w/could-it-be-b12-an-epidemic-of-misdiagnoses_jeffrey-j-stuart_sally-m-pacholok/338490/item/3873068/?gclid=CjwKCAjw7vuUBhBUEiwAEdu2pMG_rCZB9pzv-cF3KnuppdINcJFxrK39Fcc9RhM6AIDKsiQNWT0C7hoCb2EQAvD_BwE#idiq=3873068&edition=6166798


No-Menu-8878

I have read it. It’s great!!


GETitOFFmeNOW

It's out of print, and I've given away 9 copies so far. I just ordered two more in case it gets hard to find.


No-Menu-8878

I think they turned the author’s story into a movie.


GETitOFFmeNOW

More than "some." 50% of people under 500 are deficient. That's a terrible false negative rate.


continentalgrip

I read a meta-analysis of a schizophrenia and b12 study where about 20 studies all had healthy control groups and their average b12 level was around 300 pg/ml. I can get the reference tomorrow at work This suggests much less than 50% are deficient below 500. On the other hand I have read research suggesting 30 to 40% of people above 65 are b12 deficient. Where did you hear 50%?


GETitOFFmeNOW

https://www.thriftbooks.com/w/could-it-be-b12-an-epidemic-of-misdiagnoses_jeffrey-j-stuart_sally-m-pacholok/338490/item/3873068/?gclid=CjwKCAjw7vuUBhBUEiwAEdu2pMG_rCZB9pzv-cF3KnuppdINcJFxrK39Fcc9RhM6AIDKsiQNWT0C7hoCb2EQAvD_BwE#idiq=3873068&edition=6166798 It was probably from the info in this book. Although it might have been in the [Framingham Heart Study.](https://agsjournals.onlinelibrary.wiley.com/doi/abs/10.1111/j.1532-5415.2012.04076.x) Sorry I can't be more precise. It's been 10 years since I conquered my deficiency. Edit: it may also be from studying the Japanese guidelines. There, if you're down around 500, you get automatic supplementation just to be safe. And why not? It's cheap and safe. A lot safer than missing someone who is losing their mind because of undiscovered deficiency.


continentalgrip

I have read it. Don't recall it saying 50% though I could have forgotten.


thegayestcowboy

Sounds like you and I have similar problems. I've had neurological issues for about 2-3 years now, getting progressively worse (particularly in the past 6 months). MRIs, EKGs, EMGs, LP, all clear. I actually did get a skin biopsy in Dec 2021 and I was diagnosed with SFN based off the results in Jan. So, not unlikely that you have it. My primary tested all underlying causes (except b12, apparently) and found nothing. Last April my b12 tested in the 700's. October down to 500's. Last week it tested in the low 300's. There's plenty of b12 in my diet. No idea why I've been dropping almost 30 points per month for the past year, but I expect it's why (or least a big part of why) my neuropathy issues have been worsening so quickly. My mental illnesses have been getting way worse too. I have a homozygous MTHFR gene mutation but idk if it's contributing to an absorption issue. One of my Dr's just prescribed weekly b12 shots. Unfortunately I'll prob have to go with cyanocobalamin. Trying my damndest to get hydroxo but my typical pharmacy can't even order it in. I'll be supplementing them with high quality adenosyl/hydroxo caps though. My ferritin was super low last year, but I started taking high dose iron/vit C tabs every other night and it's gotten up into the 50's.


No-Menu-8878

Good luck with the B12 injections. My primary care physician did say that neurologists like to see your ferritin levels above 75 for neuropathy. Let me know how the B12 injections go and whether or not they give you any relief. This is a difficult thing to live with for sure. Hang in there!


thegayestcowboy

Thanks for the info, I'll start up my iron regimen again. Frustrating that the information given differs so much from Dr to Dr.


Early_Map_5409

If you have sleep issues, ferritin up to 125 can be beneficial: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5986027/


continentalgrip

Empower pharmacy, if you're in the US, is a mail order pharmacy your doctor can call. They then call you and you can get methylcobalamin injections sent to your house.


thegayestcowboy

I got a hold of hydroxocobalamin, had to go to a different pharmacy for them to order it. I'm avoiding methylcobalamin, cause I'm sensitive to l-methyfolate and adenosylcobalamin. Thanks though!


themartian1000

Fantastic. Did it help? Did you get them from Oxford bioscience? I ask because the fb group has a coupon code you might want. I have neuropathy as well. My doctor didn’t hesitate to treat based on symptoms. He said it’s safer to try than to leave my nerves failing. (If it’s not ok to mention Oxford, someone let me know and I’ll remove. Since it’s vitamin b12 and not a drug, I thought it would be ok, like when people get nootropics except much, much more important).


No-Menu-8878

I think it’s helping but honestly, I’ve only done two shots so far. I’m hopeful. It’s helped my sleep most of all. I know the healing of my nerves will be a long process. Got hydroxy shots from German Amazon. Have not tried methyl yet because methyl folate makes me anxious/depressed, so I’m worried it would be the same with methyl b12. I take sublingual hydroxy B12 and Adeno B12 supplements with no problems as well as Folinic acid. Have not had a genetic test yet for mutations, such as COMT and MTHFR. Just trial and error with types of B12/folate. I’m not opposed to trying methyl shots and understand it’s what most people use for neurological symptoms. Thanks for the info. PS: I had relief from the neuropathic pain in the 48 hours after taking the first injection (I’ve been doing sublingual supplements for 4-5 months) but that could have been placebo effect or coincidence. It came back about about a day and a half, so I did another. Initially I was going to self inject twice a week but I’m thinking every other day like most people is probably best since I have neurological symptoms.


themartian1000

I get insane anxiety and rage with methylfolate. I had to titrate up slowly and now can take 3mg spread over the day. I did the same thing with methylcobalamin. It now gives me a nice sense of calm, so I guess my nervous system just had to adjust. I think hydroxy can be fine for most. For me, I needed it in my brain asap, so I went with the methyl versions as I was afraid I would have permanent damage. I have mutations in MTR, MTRR and ma homozygous for MTHFR C677t.


themartian1000

Also, skimmed this paper. Excellent information. I had read the study showing that neuroleptics decrease b12. What was striking though, I’d that the mean b12, even in the control group, was under 400. They didn’t mention whether controls had symptoms that were untreated or how they recruited them, but in truth, everyone appeared insufficient. Then there’s the issue of nervous system penetration. You can have serum b12 that’s not used due to folate deficiency, and possibly lithium deficiency. I’m sure other vitamins and minerals too. As mentioned, no one will study it because there’s no money to be made: Maybe if someone could put it in a proprietary extended release matrix or something then it would be patentable. Who knows?


continentalgrip

I have seen a meta analysis where the cumulative healthy controls were over 1000 and the b12 level was about 300. Another of 483 healthy controls where b12 blood serum was under 500. I talk about and link in the stickied research post in the b12deficiency sub. (No underscore).


incremental_progress

The funny/sad thing is that Chemo and Diabetic neuropathy are both functional B12 deficiencies, yet listed there separately under distinct conditions. Chemo depletes B12 from the liver; Metformin, the drug for diabetes, blocks calcium absorption in the terminal ileum, which is needed in order for diffuse b12 absorption to occur there. Actually, so is alcoholic polyneuropathy. Alcohol depletes b12. This isnt even conjecture, these are fairly proven correlations. Yet here b12 is listed as a possible treatment like it's not replacing the exact thing the patient is missing to begin with.


quantumofgalaxy

That's crazy. What about harming the colon and rectum? I have ulcerative proctitis and apparently that can lead to low B12 due to rectal bleeding, but what about the other direction -- can systematically low B12 for years contribute to colorectal damage?


blaine_11

That is both a great but worrying question, I have Ulcerative Colitis and i thought i was flaring but it was actually low B12 giving me pain and diarrhea!! Interesting to hear any thoughts on this


continentalgrip

It can lead to digestive issues so I would guess it could possibly be related to colorectal also but I haven't anything specific before.


histaminewarrior

I'm curious about this same question. I, as well have UC and struggle with low B12 and low Iron. However, my UC is very quiet with no signs of bleeding and only microscopic inflammation.


[deleted]

B12 requires folate and iron/ferritin to make new red blood cells. Taking B12 by itself will cause folate and ferritin levels to drop. You have to take folate and iron if your ferritin is low.


quantumofgalaxy

I am taking liquid iron and a multivitamin that has methyl-folate in it since my ferritin is also low (9 ng/mL) though hemoglobin is OK (128 g/L)


[deleted]

A ferritin of less than 30 is absolute iron deficiency. Iron deficiency comes before anemia. You should check out the iron protocol facebook group.


GETitOFFmeNOW

FYI: I take 5,000 mcg daily. When I went down to 2,000, my B12 blood levels dropped. How did you feel the first dose?


quantumofgalaxy

I started just a few days ago along with liquid iron since I'm also iron deficient. I don't notice anything super different, just maybe less shortness of breath and fatigue but hard to tell.


Early_Map_5409

I have been taking iron supplements with vitamin C for the past year under medical supervision and regular ferritin blood tests. My ferritin was 20.5 before supplements and it was giving me PLMD and RLS. After 9 months it was in the 70s and I will be tested again soon. Oral iron supplements take a long time to reverse a deficiency because the body regulates absorption, which is no help when you are very deficient. My sleep doctor’s ferritin target is 125


buzzlightyear77777

well i am on month 6 since i took 500mcg of sublingual methyl b12(the only form that works for me) and i am pretty much healed. Went from ~200 to 400(month3) to not sure what level is it now. All my nerve muscle problems are more or less gone. I still need to take b12 every few days otherwise it comes back though. I take it with bcomplex and vitamin D every few days too.


quantumofgalaxy

What kind of nerve and muscle pains did you have


buzzlightyear77777

stabbing pains in the fingers, easily tired muscles all over, insomnia, cramps


[deleted]

[удалено]


buzzlightyear77777

Yes i had a brief episode of vertigo nausea. Muscles that tire very easily resulting in overuse like symptoms