[rec60661]

thank you to all once again for this very helpful information! I was diagnosed about 6 weeks ago with PN caused by taking an antacid daily for over 10 years and Metformin over the past 18 months. I have had numbness in feet for quite a while, but when I started stumbling and tripping I took notice.

None of the docs diagnosed a b12 deficiency because serum b12 is normal; however, sudden onset of trembling throughout my body, jerking and twitching muscles every time I would stop moving led me to think it may be B12.

I have had 7 k1000 mg doses of the "cyan" type of B12 and 5 1000 mg doses of the "methyl" type (we FINALLY found a local source!). I am also taking 900 mg's of Neurontin daily to control symptoms.

My question is: My muscles are extremely weak and now my doc is suspecting MS. Is profound weakness a side effect of high dose b12 therapy?

[mrsD]

When you start B12, because of being low, the B12 is prioritized by some body mechanism to be sent to critical areas..one of which is the bone marrow.

Here it gets everything going to replace the blood cells the marrow makes. Each cell gets some B12 also, along with increased use of potassium.

If you are low in potassium to start with, or marginal, you can get extreme fatigue and weak feelings. So eating high potassium foods may help this. You can get tested as well, but potassium often shows normal or high when it is not. This is due to the lab mishandling the sample ...which involves bursting the cells and dumping the potassium into the serum. If you show a real LOW that is probably accurate. But some normals and highs may be factiticious (falsely elevated).

This fatigue will go away as you use the B12 to normalize the bone marrow cell factory.

It takes time to fix low B12. The liver, will grab some of each dose for storage, and some will go into the spinal fluid and to the brain. These 3 sites have a high affinity once the B12 therapy is started. It took you months and years to get where you are now, so be patient as your body restores itself and stores some B12 for the future.

Some people find that weak muscles may also respond to some Acetyl Carnitine. This improves mitochondrial functions which we feel as "energy" and strength. Start low at 500mg a day and you may increase if you think you need to, by 500mg a week up to 2000mg a day in divided doses.

[rec60661]

Mrs. D - you are absolutely amazing at your knowledge and your willingness to help others. So many of us are scared and confused and getting absolutely no help from doctors who really are very good, but so misinformed on b12!

I will stay the course and take your advice by adding AC. To combat weakness I just bought 5 pounds of bananas!! Will work on increasing potassium and will I will look into taking a supplement as well.

If it helps anyone out there I do think that protein is also very important. I have no appetite but it is easy to hard boil a couple of eggs each day and take them with me to work.

Once again, thank you sincerely. I was down in the dumps but you have lifted me up! If all it takes is patience ... I can definitely stay the course.

[mrsD]

Here is a link to a new paper explaining that B12 levels were found lower in brains with schizophrenia and autism:

http://psychcentral.com/news/2016/01...ism/98153.html

[Lara]

mrsD, I hadn't read your post here before I sent it off in PM. Sorry about that.

Full article here... Totally over my head unfortunately

[Also note limitations with such a small sample size.]

http://journals.plos.org/plosone/art...0146797#sec009

Research Article PLOS ONE
Decreased Brain Levels of Vitamin B12 in Aging, Autism and Schizophrenia
Published: January 22, 2016
DOI: 10.1371/journal.pone.0146797

[MelodyL]

Originally Posted by mrsD

Here is a link to a new paper explaining that B12 levels were found lower in brains with schizophrenia and autism:

http://psychcentral.com/news/2016/01...ism/98153.html

Hi, I wish I could show this to someone I know. Their son has been diagnosed with Aspergers. Can't bring it up.

I think all diseases and syndromes are caused by heredity and deficiencies in one thing or another. We are meant to have a balanced system. That means not polluting it with processed food and additives. Why are they allowed to be available?. I walk into Dunkin at night to sit with my friends. They are all eating donuts and sugar laden stuff and I just sit there and drink my water. They look at me like I was nuts and I politely say "you know I'm a diabetic and I can't go near any of this'. They all say the same thing 'but can't you cheat once in a while'? I say "Sure, but why would I want to?" They don't get it. I didn't get it when I was young either but I certainly do now.

Why are we bombarded with sugar laden food, sodas, other bad things, tobacco etc. when the known result will be illnesses and diseases? Why? Just so the phamaceutical companies can have a field day with us?

My goodness. I'm just thankful I still grow my sprouts and microgreens. I made a dish tonight that was amazing (without any added sodium). I took bok choy, my pea shoots, my fenugreek, my other microgreens, some onions and garlic, added some orange ginger crystals I get from True Lemon.com and then I did a stir fry (with no salt). Added curry. OMG to die for. I have no idea how but i'll try and upload a photo to this site.

Melody

P.S. I just uploaded the photo of what I cooked tonight. I made it my album cover. The colors of this dish were amazing.

[deepak2016]

deepak2016,

I copied your post to the main PN forum area, here is the link to it -
http://neurotalk.psychcentral.com/thread232413.html

[DavidHC]

This may be useful:

http://chriskresser.com/what-causes-...w-to-treat-it/

[Kaybaby]

Mrs D,

How does my B12 look?

Thanks so much

VIT B12 BINDING CAPACITY, UNSAT (TRANSCOBALAMIN)
601 L Range 650-1340 (pg/mL)

VITAMIN B12
1189 H Range 200-1100 (pg/mL)

METHYLMALONIC ACID, GC/MS/MS
110 Range 87-318 (nmol/L)

[mrsD]

Did you stop your B12 supplement a few days before the test?

Or were these numbers reported before you started any supplementation?

Your B12 is high in any case...the meaning of it depends on the two questions I've asked.