[mrsD]

I think it is unlikely that 50mcg a day of B12 would put you so high.

Echos has a point however, about your B6 intake. The only way to isolate this problem is to discontinue the Complex and only use the B12 separately.

Red Yeast rice works like statins. It contains statin-like chemicals, and we know statins can cause PN. Each of these supplements varies in how much statin-like actions are present, depending on the quality of extract used by each manufacturer.

Riding bicycles move the ankle alot. If you have any tarsal tunnel entrapement issues or arthritis, you can aggravate the nerves with this form of exercise. I have scar tissue from a surgery on my left instep, and the bikes always aggravated pain in that foot for me.

Your foot burning can be due to many things, in other words.

[Starglow]

Could it be possible that my B12 levels are high because the body isn't absorbing B12 for some reason? If so, what could possibly cause that to happen? Is there a specific test that can be done to check B12 absorption rate?

I'll stop the B-complex and just take B12 as suggested and see what happens.
The burning in my feet seems to be less now, but my right leg is still weaker than the left.

Thanks for all your help and support! 8-)

[mrsD]

B12 levels cannot become high, if you are not absorbing.

They can become high if your kidneys are not excreting it.
So some studies show high B12 levels when no supplements are taken, as kidney related.

High levels of B12 with no supplements, may occur with some leukemias, or some intestinal dysbioses (infections with certain B12 forming organisms). These are pretty uncommon and not usually found with a B12 screen.

[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.

[mrsD]

I love it when people pass information on to others, esp doctors.

Since they won't learn this for themselves, I guess the patients have to teach them?

There was an episode on the Discovery Show Mystery Diagnosis, about a poor woman who had terrible symptoms for 10 yrs, including poor balance, vision changes, panic attacks, etc, which totally changed her personality. (they didn't go into "psychotic" but it could be possible I think). She saw a show with a rheumatologist on it, and in desperation went to her, and was quickly diagonosed with B12 deficiency. (her level was around 200). None of the many doctors she consulted for TEN YEARS found this cause!

You will probably need B12 for life. Don't be tempted to stop it when your levels get better-- some people do and as a result they relapse.

I'm glad you are feeling positive now, and I hope you continue to spread the word and improve!

[daisydc]

mrsD:
None of the B12 symptoms have really scared me yet, the tingling, tremors, mind fog, pins and needles everywhere, but this anxiety and terrible mind games that I am going through are really scary. I don't know how long I can hold out without help of some kind. I have had it twice since November. My therapist is aware and so is my family and they hope I make a complete recovery. My doc wants me to take an SSRI (LEXAPRO) for the anxiety. I don't know what to do anymore. I think the high levels of B12 can also make you jittery and nervous. I am holding on by just a small thread. Any help would be appreciated. Thanks so much from someone who really understands.