[mrsD]

Welcome to NT....

You are free to Google B12 anytime, and find reputable links to satisfy your doctor. I have some on this thread in fact.

You can follow your doctor's advice, and see if you get worse, or no better, and then decide 1) find another doctor, or 2) take control of your body yourself. When it comes to B12, this supplement is very safe to deal with yourself. This is not true for everything in life however.

We would like to think in a perfect world, our doctors know everything that will help us and make us better. But the truth of the matter is that they do not. In a decision like this, you need to consider if doctor's advice is better than your body's needs.

Do this-- make your doctor prove to YOU that a serum level of B12 at 2000 is harmful. I'd like to see what he/she comes up with!

In fact lab ranges are arbitrary. They are taken from volunteers who appear healthy, and averaged. They are not based on people who are supplementing anything. Extremely high B12 in a person who IS NOT supplementing, may point to some rare conditions. That is all they mean.
And furthermore, what is very lame about the US, is that the LOWER end of the range is out of date, compared to other countries. Normal is considered 150-200 here and in Japan anything below 500 is abnormal.

[MelodyL]

Hi Starglow:

Sorry to hear that you are having tingling and burning. My last B-12 level was 2000 and I explained why this was so to my primary care physician. He listened and said "melody, keep doing what you are doing".

See, I also take a B-Complex once a day. And I take 5000 of the Jarrows formula of the Methyl B-12.

What exactly is in your B-Complex? Does it say Cyano or Methyl B-12. there are various kinds. And I completely agree with Mrs. Doubtfire (that's how I learned what I learned.....I LISTEN TO MRS. DOUBTFIRE.

I don't think I'd be where I am today if I didn't LISTEN TO MRS. DOUBTFIRE.

So, do as she suggests. Also list what other supplements you are taking.

Everything (sometimes, doesn't go together).

Are you diabetic?

Melody

[echoes long ago]

could it be possible that you were getting too much B6 in your B multi vitamin and since you stopped your B6 level has decreased and thus you are feeling better. High B6 can cause PN and also make it worse if you already have it. Did you have your B6 levels tested also?

[daisydc]

I am a new poster on this board. I am a 45 year old female living with a undiagnosed neurological disease for five years. I have a severe B12 deficiency with such symptoms as numb hands and feet, lancinating pain into my fingertips, memory loss, cold fingers and toes, lack of energy ect. The disturbing part of my disease is that I have an abnormal EEG with silent temporal seizures and now have developed a slight tremor in my right side. Many times my right side feels dead and not attached to my body. The most annoying symptom is a deep body vibration that seems to come out of the center of my chest and radiated down my arms and legs. I have had many MRI's and SSEP's and blood work without any answers. All were negative for placques or abnormalities. Only the EEG was abnormal. No one thinks I have MS which mimics all of these symptoms. I am a self employed chiropractor and am aware of long term effects of B12 deficiency. I have been doing intramuscular shots intermittently for five years. Is there anyone out there who has anything like this, and has anyone gotten worse while administering shots. I am at a loss and refuse to be tested anymore since I spent $18,000 out of pocket last year and got no answers. Any feedback would be greatly appreciated.

[mrsD]

Originally Posted by daisydc

I am a new poster on this board. I am a 45 year old female living with a undiagnosed neurological disease for five years. I have a severe B12 deficiency with such symptoms as numb hands and feet, lancinating pain into my fingertips, memory loss, cold fingers and toes, lack of energy ect. The disturbing part of my disease is that I have an abnormal EEG with silent temporal seizures and now have developed a slight tremor in my right side. Many times my right side feels dead and not attached to my body. The most annoying symptom is a deep body vibration that seems to come out of the center of my chest and radiated down my arms and legs. I have had many MRI's and SSEP's and blood work without any answers. All were negative for placques or abnormalities. Only the EEG was abnormal. No one thinks I have MS which mimics all of these symptoms. I am a self employed chiropractor and am aware of long term effects of B12 deficiency. I have been doing intramuscular shots intermittently for five years. Is there anyone out there who has anything like this, and has anyone gotten worse while administering shots. I am at a loss and refuse to be tested anymore since I spent $18,000 out of pocket last year and got no answers. Any feedback would be greatly appreciated.

Hello Daisy, and Wellcome to NeuroTalk!

The first question I'd like to ask you is what form of B12 were you getting by injection? Cyano or hydroxycobalamin? (some people do get compounded methyl B12 --did you?) Injections only show blood levels for 72 hrs (according to my pharmacology reference). The body does not like bolus vitamins and I think injections are not really the way to go. Most of the high B12 might be excreted. Daily use, is more biologically similar and that is why oral works well too.

Cyano is hard on some people. If they cannot activate it properly to methyl, then response would be poor. Hydroxy form does not carry that problem.

I'd give up the shots and do 5mg oral of methylcobalamin daily--on an empty stomach--- for several months. Then get retested. That seems like alot of money for correcting something that could be much less expensive. You might want to get a MMA test too. And Vit D.
People with chronic pain, often do better pain wise if they correct a low serum Vit D level.

[daisydc]

Thank you for the quick response. The reason that the costs were so prohibitive was that both my sister and my first cousin have MS. The neuro's here were so convinced that I had MS that no stone was left unturned in the testing. Which by the way was all inconclusive. The MS clinic in Rochester NY thought I might be one of the 1% of patients who do not show MRI signs but still have relapsing remitting MS. I have had neuro consults, ortho, GI/GU, acupuncture, chiropractic, massage, Reiki, blood work and detoxification. All I know is the past five years have been very stressful and frustrating.I have been using cyano 1000 mcg 1x week for one year, then once/two weeks and finally once per month. I read and researched all I can on the B12, cyano vs methyl vs hydroxy and the abilities of the body to absorb each of them. I am taking No Shot Methylcobalamin but according to what you have said, not enough. I am also upping my folic acid, not folate but folic acid sold by Metagenics to bring down my homocysteine levels. It is all so complicated. If you take too much folic acid it actually reacts and raises the level of homocysteine which is bad. It is all a balance I guess. My MMA was within the normal range, I think less than 1. When I stop the shots, I end up where I am now with the ugly symptoms that are misunderstood, misdiagnosed and inconvenient to say the least. I have not in the past found methyl in the injectible form. Also when I have the B12 serum levels tested, they are within the normal range, although the symptoms are intermittent, sometimes completely gone and other times like right now that they are pretty intense. To add to it all, my 46 year old sister is dying of cancer. I have learned to never say it can't happen to me.......................

[mrsD]

You can have methyl compounded into injections. The autism community does that. Use a compounding pharmacy.

But I don't think injections are the way to go long term. The body does not handle bolus vitamins well. It wants to excrete them.
B12 is carried into the CSF and is also stored in the liver also.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC488275/

For about 100 dollars you can have a DNA MTHFR test to show if you have trouble methylating folic acid and B12. There is a special folate called l-methylfolate that bypasses this genetic error which occurs in about 1 in 10 people. It is in the RX vitamin Metanx and also OTC as MetaFolin by Solgar in 800mcg dose. There is a discussion right now on our forum here about it and the failure of a new product posing as an equivalent generic. I have more details there.
http://neurotalk.psychcentral.com/thread114302.html
It is also available RX in a very very high dose of 7.5mg as Deplin for mental depression. Regular folic acid has to be methylated in the body before it becomes useful and active.
If one has the gene polymorphism failure, regular folic acid does nothing.

On that thread I discuss the problems of TOO MUCH folate as well.

Many of us here do very well with once a day oral B12. The trick is to take enough, and to take on an empty stomach.

[daisydc]

mrsD:
Thanks for the valuable information and links on this subject. I have started 5000 mcg orally of methylcobalamin daily, upped my calcium and magnesium, seperated the folate from the B12 and also doubled my Vit D3. I have suffered from severe anxiety related to the B12 deficiency and may be one of the rare cases that actually had a psychotic episode that has no other explanation than the B12. It is very scary and so completely out of character for me, it almost sent me over the edge, literally. The only possible reason for the mental dysfunction that we can come up with is the B12 issue. And it came out of no where. Although I am under much stress with my sister dying, it was not any more than usual. I cannot find literature that discusses the symptoms of someone like myself that has been treated for five years for this disease, but still has flare ups and depletions along the way accompanied with physical and psychological impairments. Is anyone else having similar things happening to them? I was under the impression (wrong of course) that once you started treatment, the symptoms would disappear and the neurological and psychological damages that have been done would be repaired. Or at least I would not get worse. I have read many studies about the irrational and psychotic behaviors of subjects low in B12 that are fully rectified with treatments. I am very interested in meeting with my local health care providers and giving them a presentation concerning my case. I am lucky enough that I have professional relationships with them and they really will listen to my story. There is certainly enough information out there, it is just not getting into the right hands and the right minds. I appreciate all the information and help and will continue to pass on any information I find on the subject.

[simsons]

My B12 is 206. Neuro says normal is from 180 - 800 so mine is normal low. Cal you have symptoms at this level. I have weird vibrations/shaky feeling most of time. Specailly when I am standing or sitting too long. ANA was positive at 1:160 but eveyhting else was negative. EMG negative for left side. All tests so far are negative. I have pain where I have vibrations. In leg calf muscle and behind neck. Am curious. Have thryoid but controlled with meds.

[MelodyL]

Originally Posted by simsons

My B12 is 206. Neuro says normal is from 180 - 800 so mine is normal low. Cal you have symptoms at this level. I have weird vibrations/shaky feeling most of time. Specailly when I am standing or sitting too long. ANA was positive at 1:160 but eveyhting else was negative. EMG negative for left side. All tests so far are negative. I have pain where I have vibrations. In leg calf muscle and behind neck. Am curious. Have thryoid but controlled with meds.

Hi.

Yours is NOT NORMAL LOW, Your's is TOO low. Much too low.

I take 3000 to 5000 of Methyl every morning. My last test had my B-12 level at 2000. I feel fine and have no symptoms of neuropathy (which is why I went on Methyl b-12).

Doctors DON'T KNOW ANYTHING ABOUT METHYL B-12.

They practice medicine, NOT NUTRITION.

Just wanted to add my two cents