NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)
-   Peripheral Neuropathy (https://www.neurotalk.org/peripheral-neuropathy/)
-   -   STICKY - The Vitamin B12 Thread: (https://www.neurotalk.org/peripheral-neuropathy/85103-sticky-vitamin-b12-thread.html)

mrsD 11-18-2014 08:24 AM

Never accept "normal" as a result from your doctor, for B12.

Ask for the actual result...in numbers. This is because labs still report down to the 200's as "normal" and that is not adequate if you have neurological symptoms.

The early posts in this thread have a link to a medical webpage, which discusses 400pg/ml as the new acceptable low.
Some patients may also need an MMA test to firm it up as well.

Darkaz7 12-12-2014 09:22 AM

I posted here about 4 months ago with a B12 of 300 and folate of around 2, both I was told were in normal range. I had severe muscle twitching, muscle pain, derealization, heart palpitations, panic attacks, pains after urinating.

I took Jarrows B12 5000mcg and 1.6mg folate daily for 3 months. Slowly most symptoms evaporated. I stopped for a week and got blood tested again. Now at 723 ng/L B12 and 14.3 ug/L Folate. I was also mildy magnesium and vitamin D deficient which have been corrected.

There's 2 reasons I'm posting. Firstly, I want to say thank you to those that offered me advice here and were more helpful than any doctor. Secondly I want to ask, what now? I still suffer from some muscle twitching in strange places (eyelids, bridges of feet etc). Should I keep going with the B12 and folate? I have noticed that the big doses of B12 now actually cause an anxious sort of stimulation a while after taking them.

mrsD 12-12-2014 09:53 AM

Are you taking a fish oil/krill oil supplement? Do you eat salmon etc?

Twitching can be due to low Omega-3 status. There is a study in PubMed from years ago investigating fish oil for eyelid twitching.
It worked well. It was done by the Basel company--long before the RX Lovaza fish oil was put on the market.

I am happy for you and your positive update.;) You can cut back to 5000mcg twice a week and see how that works. (or when those are finished, use 1000mcg a day). But you got low for some reason and I think it is best to keep on with some form of them for life.

Restoring an imbalance in your body can take a while. It took years probably to surface for you to notice it. You may have some genetic reason also for needing more than other people.

Darkaz7 12-12-2014 10:11 AM

Quote:

Originally Posted by mrsD (Post 1112585)
Restoring an imbalance in your body can take a while. It took years probably to surface for you to notice it. You may have some genetic reason also for needing more than other people.

Celiac disease is the most likely culprit, I'm being endoscopied in 2 months to confirm but I feel a fair bit better gluten free.

One thing that's interesting is my MCV was 99.6 before (upper limit 100). It's now reduced to 87.3 which is almost flat in the middle of the range. One thing I'm a bit unsure about now though is my red cell count and hematocrit have dropped to mildly anemic levels, but ferritin is perfectly normal. Is this just part of my body adjusting to now having enough B12 to form correct blood cells?

mrsD 12-12-2014 10:59 AM

Copper is also needed for red cell formation. So you might get a copper/zinc ratio done. Celiac patients get low in minerals as well as B12.

Copper is not typically tested for. But some posters have shown up here with low copper. Also for some reason, patients with MS can be low in copper, and their doctors more commonly test for it.

Copper and zinc are absorbed in a ratio by the body. If zinc is too high or plentiful, copper will decrease, and vice versa.

MelodyL 12-12-2014 04:38 PM

Hi, I just had to post today. Yesterday my 82 year old landlord (also my friend) went to her Doctor for her annual checkup. Thankfully, she's healthy as a horse but her doctor wants her to keep coming in for B-12 shots. Now she's been taking Methyl B-12 for about a year now. She told this to her doctor who said "They are no good, you must come in for shots". She doesn't pay any co-pay for these.

I told her. "Listen, I've been talking about taking Methyl B-12 with you for about 7 years, you know that I take this every morning and you began taking them right?". She said "Right". Then I said 'The reason these doctors keep making appointments for you to come in so they can bill your insurance company". She said "Oh, I completely agree" But because her doctor made the appointments, she will get her daughter to drive her to these appointments and she'll go in, get a B-12 shot and then come home.

We are conditioned to listen to our physicians.

I, for one, am NOT conditioned any longer. Three weeks ago I had the most horrendous experience at my podiatrist I don't even want to share this but I am going to so just in case, if it happens to anyone else, you will know what I suffered.

I go there for my ingrown toenail. I go regularly. My podiatrist hates the fact that I go for pedicures. I have NEVER had any problems with my pedicurist. These people know what they are doing. But podiatrist don't like when we go there. So I hadn't gone in a while and I had been keeping up my podiatric appointments.

Let me tell you what happened. He did not cut my toenails with a toe nail clipper. He took some kind of drilling or grinding tool (with a point) and then he dug it into my ingrown toenail.
To say I jumped out of the chair calling him every name in the book is putting it mildly. He calmly looked up and said "What??" I'm not hurting you". I said "Are you out of your mind"? He started laughing and proceeded to finish up. Took him all of 2 minutes to do all 10 toes. No soaking, no nothing, He used the same tool (with a different bit) on my calluses. I said "If you ever do that to me, I'll kill you". He said "listen, I'm a foot surgeon, not a pedicurist" I feel he was getting back at me for my previous visits earlier on in the year.

Well, I knew I would never go back. Yesterday I went back to my pedicurist and when I told her what happened, the whole place went nuts as if they had the shivers and all I heard was OMG, OMG.

She was gentle, she said" This time you don't need anything cut, come back in two weeks". She did the cleaning out and whatever they do. I soaked my feet in the water (the whole place is immaculate by the way). She did my calluses, she massaged me, the whole visit was 45 minutes and I paid $10 (same co-pay as the podiatrist). I also found a new podiatrist just in case I ever need one for any reason.

I will never go to that doctor again. I don't want to make any trouble for him because he takes excellent care of Alan's foot and Alan has no more foot ulcers and has brand new custom molded shoes because of this guy but this guy and me? Forge it.
Sorry to hijack this topic but I had to share.

Now back to Methyl B-12. I had a podiatrist tell me that he would never EVER give a B-12 injection to anyone because it's only for anemia. I explained that I had mild neuropathy and began taking it 8 years or so ago and had really no symptoms (I have diabetes). He was not hearing any of it. One year later (this is a different podiatrist by the way). One year later, he popped his head in and said "Melody I have just been diagnosed with diabetic neuropathy, what's the information about the type of B-12 you take?" See, doctors don't know anything.

mrsD 12-12-2014 05:39 PM

Mel...I bet that doctor charges well over $100 for those shots to your landlord. Costs him about 50 cents.

Here we have had two oncologists (cancer doctors) who bilked Medicare out of many millions by giving chemo to people who did NOT have cancer! The following link is just one of the recent ones:

http://www.mlive.com/news/detroit/in...to_orderi.html

Imagine 109 MILLION dollars in fraud! Not to mention poisoning people with dangerous chemo drugs that could destroy their health or even kill them!

Medicare is specifically susceptible to fraud. People like hubby and me have double coverage. So we don't even pay copays for most Part B bills. So the doctors look at us as golden cows to bilk. My podiatrist who removed my toenail when I banged it wanted me to come in every 2 months.... yeah sure! He is a nice guy and for all my other issues in the past was very helpful.
But I will not participate in the bilking of Medicare, now that I have it.

MelodyL 12-13-2014 09:29 PM

Quote:

Originally Posted by mrsD (Post 1112650)
Mel...I bet that doctor charges well over $100 for those shots to your landlord. Costs him about 50 cents.

Here we have had two oncologists (cancer doctors) who bilked Medicare out of many millions by giving chemo to people who did NOT have cancer! The following link is just one of the recent ones:

http://www.mlive.com/news/detroit/in...to_orderi.html

Imagine 109 MILLION dollars in fraud! Not to mention poisoning people with dangerous chemo drugs that could destroy their health or even kill them!

Medicare is specifically susceptible to fraud. People like hubby and me have double coverage. So we don't even pay copays for most Part B bills. So the doctors look at us as golden cows to bilk. My podiatrist who removed my toenail when I banged it wanted me to come in every 2 months.... yeah sure! He is a nice guy and for all my other issues in the past was very helpful.
But I will not participate in the bilking of Medicare, now that I have it.


Hi Mrs. D:

I completely agree. Thank god my pedicurist knows what she's doing. I will never go back to that man again.

Take care. Hope you enjoy Happy Holidays.

I haven't had a Merry Christmas for 12 years.

It's something I deal with every year. This too will pass. It always does.

Love ya, Melody

aneczka 12-18-2014 04:22 PM

Methyl Vitamin B12 rescues motor neuron cells from homocysteine-mediated cell death
 
Maybe this has already been posted somewhere, maybe not; sorry for potential cross-posting. I'm browsing green med info for the second day in a row now and found an anormous wealth of useful and high-quality information, like this one.

High homocysteine and low B12 levels are apparently able to cause motor neurons death :eek:

http://www.greenmedinfo.com/article/...ted-cell-death

Test your homocysteine levels.

mrsD 12-18-2014 04:44 PM

Thank you for posting that! All links and information about B12 are welcome on this thread. ;)


All times are GMT -5. The time now is 09:05 PM.

Powered by vBulletin • Copyright ©2000 - 2025, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise (Lite) - vBulletin Mods & Addons Copyright © 2025 DragonByte Technologies Ltd.