[karsten]

Originally Posted by julleri

Ah, thank you MrsD!

When you say it is best to avoid all folic acid products while taking methylfolate, do you think the small amount of folic acid in the Country Life dibencozide would present a problem? It's 200mcg. I'm not even sure why they put that in there? What does folic acid have to do with dibencozide, or B12 in general in that matter?

I found myself asking this same question several months back. I have used Country Life dibencozide for quite some time, but I didn't want the folic acid that went with it.

I have worked hard trying to just take methylfolate in lieu of folic acid which appears in many foods and supplements.

I found this B complex which works very well for me:

Douglas labs B complex with Metafolin

http://www.douglaslabs.com/pdf/pds/200765.pdf

I take this once a day along with vitamin C, D3 and and gamma E. It provides a suitable dose of methyfolate along with the B vitamins in good forms. I do take additional B12 than what this product has but it does contain methyl B12 (not B12 cobalamin) which is a bonus.

[julleri]

... numb patch of skin on my left leg. It's on the side of my thigh. I don't know quite how long it's been numb. I'd say at least 4 months, maybe longer. I don't know if it's spreading or not, either.

Question is - can this be from low B12? I've had a host of unusual neuropsychiatric stuff going on with me. The neurologist I saw (the most recent, and the one I liked better of the two I saw) didn't say anything of it, but I did give him a LONG, as he put it "laundry list that could not be any one thing." He was also well aware of my B12 issue and knows how my levels are back up. Also said doesn't think I have a neurological disease. So, it must be B12? Can a deficiency in this vitamin cause numb patches of skin? Will it get better over time, or could it be a permanent patch of "dead nerves"?

I realize we aren't doctors. Just wondering if anyone would know or had something similar. I'm thinking it's from the B12...

Thank you!

[karsten]

Originally Posted by julleri

... numb patch of skin on my left leg. It's on the side of my thigh. I don't know quite how long it's been numb. I'd say at least 4 months, maybe longer. I don't know if it's spreading or not, either.

Question is - can this be from low B12? I've had a host of unusual neuropsychiatric stuff going on with me. The neurologist I saw (the most recent, and the one I liked better of the two I saw) didn't say anything of it, but I did give him a LONG, as he put it "laundry list that could not be any one thing." He was also well aware of my B12 issue and knows how my levels are back up. Also said doesn't think I have a neurological disease. So, it must be B12? Can a deficiency in this vitamin cause numb patches of skin? Will it get better over time, or could it be a permanent patch of "dead nerves"?

I realize we aren't doctors. Just wondering if anyone would know or had something similar. I'm thinking it's from the B12...

Thank you!

I'm sure my primary cause of PN was due to nutritional defiencies caused by taking prilosec for over a decade. Prilosec can cause drops in B12, folate, magnesium, iron and calcium. Now after stopping the prilosec and taking these nutrients I've been slowly on the mend.

I have a recent story about a numb patchy area on my right thigh. I was working on a new raised vegetable garden this Spring and did a lot of heavy lifting, digging, etc. I built it into a hill to get better drainage than my old spot. After 3 days of hard work I was finished. Right about that time I noticed a moderately numb patch of skin on my right thigh. Went to the chiro and he adjusted my sore back. Now about 6 weeks later it is about 30% better. I 'm virtually certain the cause is a compressed nerve. Seems like I have had more compression issues since being diagnosed with PN. Quite often I wake up in the morning with numb fingers due to lying in a certain position for too long. I stand up and it goes away literally in seconds.

Patchy numbness is scary, but in my case I know the reason was too much stress on my back lifting stone and dirt. Nerve compression might be something to think about in your case.

[julias690]

I am writing this from the hospital room where I have sat with my husband 24/7 since 05/27/2012, except for a brief 11 day discharge. I became aware that something was wrong with him on 04/22/2012, which was initially diagnosed as Vitamin B12 deficiency.

I wanted to thank everyone for their input along our journey, especially MrsD.

I was able to diagnose my husband on June 3, 2012, which was confirmed on June 21st, 2012 by the Mayo Clinic with Auto Immune anti-voltqage gated potassium channel antibody limbic encephalitis.

My husband is getting better, again thank you for everything, and being there for me.

Sincerely,
Julia

[julleri]

It's been about 3.5 months that I've been on B12 treatment. I had my first shot on March 8, was to then wait a month for the next shot (this was before I learned about proper B12 treatment when you're discovered to be low), couldn't make it (got really sick, weak, couldn't breathe or think! near psychosis episodes!!!) and got the next shot on April 3. Then, couldn't make it but a few days after THAT shot and got my next one April 6! Then convinced that doctor needed every-other-day shots with methylcobalamin. Did that for a couple weeks but then learned about this forum, the "swinging" of B12 ups and downs in the beginning, especially with shots, and using oral (sublingual) B12 at high doses, etc. I've been on 5000mcg Puritan's Pride every-other-day. On the "other day" I take 3000mcg dibencozide from Country Life. This way I'm getting both active forms of B12 into my body. I take them first thing in the morning on an empty stomach, and let them dissolve under the tongue for a little while (the Puritan's take a LONG TIME to dissolve) before swallowing with water. I don't eat for at least an hour after taking them.

Some things have gotten better, but I notice A LOT of things have not, and may be getting worse, if they are at all attributed to B12 deficiency. Now, let me say that I think I have been deficient for years looking back on all this. I had apathy and extreme lethargy and fatigue kick in sometime in 2007 and 2008! In 2009 it seemed to get worse. Now, I was on inhumane doses of antidepressants at the time, so I thought everything I was going through was attributed to psych drug use. I never knew that I had something else going on. It didn't make itself ultimately apparent until this year, when I got my test results and became VERY VERY sick (confusion, near psychosis moments, dizziness, breathlessness, bleeding gums, absolutely no appetite, trouble sleeping, etc too many symptoms to list!).

My question is, is it normal to be having more and perhaps new symptoms of B12 deficiency this far out after treatment? My last check of the level was May 8, and it was 1,844. The symptoms I'm still having trouble with and that scare me the most with regard to this deficiency are muscle and just allover mass "wasting." I voice this concern to everyone I know (my arms are a lot skinnier than they have ever been in my entire life). My friends tell me that it's "all in my head" but I know better! My feet have also shrunk in shoe size a little bit! Shoes don't fit as tightly as before anymore. I voiced these concerns to my doctors, who say everything is normal, and that have I lost weight? I lost a great deal of weight in 2011 and early 2012, but I have since been gaining significant weight back on. (When this whole B12 ordeal began back in late February, when I got tested, I was getting down to the 130s in weight. I am now about 155-160! I am a 5'10" tall man.) How can I be gaining weight yet losing mass in my arms and feet? It's so strange. The only thing I can attribute it to is B12 deficiency, should nothing "else" be going on (and doctors really don't think anything else is going on - no disease processes). I also have a lot of nerve/muscle twitches. A LOT. And they are all over my body. I was so scared by them that I thought I had ALS, but I haven't had any "clinical weakness" and I saw another neurologist who said I couldn't possibly have that (he actually thinks I have NO neurological disease whatsoever - no MS, nothing). He said that it took a long time to get as sick as I am, it will take a long time to get better (he was well aware of the deficiency in B12 and that the numbers are back up, well above the "chart normal ranges" (which I realize are antiquated)). But really? How long?

Mrs D, I know you specifically have spoken of a friend on the board named Rose, and that she suffered a long time with B12 deficiency symptoms. (I've seen her website many times during this for support.) If you don't mind my asking, do you know what kinds of symptoms she suffered? Did she, too, have muscle twitches and muscle "wasting" (I hate to say wasting or atrophy because my doctors have confirmed I don't have clinical "atrophy" as if this were a muscular disease, but I do notice nearly everything on me is a bit "shrunken" if that makes any sense! )? She saw a slow, long recovery. Will I be permanently "damaged" by B12 deficiency? My mind and body are not what they used to be, and this is frightening to me. I worry that I will be this way forever sometimes.

Things that have come back/gotten better are my appetite (it's not great but it's getting better, the dibencozide really helped kick this back into gear), I'm not as dizzy as I used to be but I still have dizzy spells, my vision is a lot clearer, not as many days with spots in my vision, some of the nerve pains have gone away, a lot of upper back pain that I think may be related to this has gotten better, although I still have bad days, my memory is a little bit better, but still have some foggy days. My hair has grown back a bit!!! Now, granted, I'm still in the thick of antidepressant withdrawal, and ALL THESE things could be related to that, too.

If you can shed any light on to what to look forward to or what those who had very, very bad B12 deficiency experiences felt, it would help me so much. Especially about the allover "wasting" -- people say I "look fine" but really I know what I used to look like and this is not me. My arms and wrists feel weaker and sometimes I get numbness and tingling in the hands! This is new! But doctors have tested me and say I am fine. I just don't get it then.

[mrsD]

Well, I am leaving this morning for vacation.

Loss of muscle mass with pain in feet/legs could be hereditary PN... called CMT. Charcot Marie Tooth. We have a post on the Subforum here you can look at.

But you could have just lost some water swelling in the feet as well.

I would get testing for heavy metals. B12 does mobilize mercury
from the body, and it is a long shot that this may be an issue for you?

Rose had combined degeneration of the spinal cord. You can Google that term, and read further. She was in a wheelchair by the time her doctor found her very low levels.
She used to post here and if you use the members list feature here you can bring up some her earlier posts.
I do recall her saying that healing for her was full of ups and downs, however.

[MelodyL]

Originally Posted by mrsD

Well, I am leaving this morning for vacation.

Loss of muscle mass with pain in feet/legs could be hereditary PN... called CMT. Charcot Marie Tooth. We have a post on the Subforum here you can look at.

But you could have just lost some water swelling in the feet as well.

I would get testing for heavy metals. B12 does mobilize mercury
from the body, and it is a long shot that this may be an issue for you?

Rose had combined degeneration of the spinal cord. You can Google that term, and read further. She was in a wheelchair by the time her doctor found her very low levels.
She used to post here and if you use the members list feature here you can bring up some her earlier posts.
I do recall her saying that healing for her was full of ups and downs, however.

Mrs. D. What about Epsom Salt soaks before bedtime. That would get magnesium into his body and maybe help with the twitches.

It's worth a try. It absolutely can't hurt.

Julleri:

Try a half cup of epsom salts dissolved in a basin (the size that you can soak your feet in). Soak for 20 minutes. Take your feet out and dry them and then go to bed (if you are ready for sleep I mean).

Let us know if this helps with the twitches. The magnesium in the epsom salts are supposed to help with muscle spasms, twitches, etc. etc.

I do this all the time.

Melody

[pjoe]

Originally Posted by karsten

I'm sure my primary cause of PN was due to nutritional defiencies caused by taking prilosec for over a decade. Prilosec can cause drops in B12, folate, magnesium, iron and calcium. Now after stopping the prilosec and taking these nutrients I've been slowly on the mend.

I have a recent story about a numb patchy area on my right thigh. I was working on a new raised vegetable garden this Spring and did a lot of heavy lifting, digging, etc. I built it into a hill to get better drainage than my old spot. After 3 days of hard work I was finished. Right about that time I noticed a moderately numb patch of skin on my right thigh. Went to the chiro and he adjusted my sore back. Now about 6 weeks later it is about 30% better. I 'm virtually certain the cause is a compressed nerve. Seems like I have had more compression issues since being diagnosed with PN. Quite often I wake up in the morning with numb fingers due to lying in a certain position for too long. I stand up and it goes away literally in seconds.

Patchy numbness is scary, but in my case I know the reason was too much stress on my back lifting stone and dirt. Nerve compression might be something to think about in your case.

Think about meralgia parenthetic compression of the fem cutaneous nerve.

[julleri]

MrsD, do you know much about vitamin B3 (niacin)?

I have been feeling very ill recently and discovered that if I take niacinamide (not the flushing kind of Niacin), I feel MUCH better.

I had been living in a moldy environment in 2012 and moved out last year, and have been trying to detox. I thought my symptoms were getting worse as of late (and who knows, maybe they are), and somehow I stumbled upon niacinamide posing strong antifungal properties. I got so sick with strange neurological and psychiatric symptoms such as brain fog, very disorganized thinking, suicidal thoughts/depression, vertigo, dizziness, balance problems, nerve pains in peripheral nerves with joint crackings and muscle weakness, severe weight loss. I took a 500mg capusle of Niacinamide one night out of curiosity and desperation and about 95% of my symptoms went away within one hour.

The problem is that I started on a roller-coaster effect of these symptoms by taking just one 500mg capsule a day. The hours after taking the niacinamide I felt what I called "normal" - better than I had felt in a long time, perhaps even years, because I could think and I wasn't depressed and I could eat, etc. Then after it wore off I crashed into a suicidal depression with all the symptoms again. I later read that people who take niacinamide take smaller doses (100-200mg) throughout the day, like every three hours. I of course went to a doctor to discuss all this, and all these horrific symptoms I'd been having. His recommendation? Take Lexapro (?!) and the "reaction" I had been having to taking Niacin are just placebo (WTH?!) and that I wasn't actually low. I don't understand this at all. He is fine with me taking so much niacinamide, but doesn't think I "need" It (and of course, thinks I need something my body and brain DON'T need and cannot tolerate - an SSRI - which I told him all about my horrid history on those, etc.) Why don't doctors LISTEN to their patients? Good lord. I shouldn't know what to do if this niacin doesn't work and I get worse and worse. I guess if I die dead in their office they may think it's not all just anxiety or in my head???

I guess my question is - what do you know about niacin and niacinamide? Antifungal properties? brain enhancing/nerve enhancing properties? Why do I need so much and crash if I go so long before taking it? How can someone in 2014 be niacin deficient??? if I even was? I read that some people cannot properly absorb tryptophan, and therefore have a hard time with B3 and serotonin levels in the brain, causing depression, psychosis, etc. Given my history, maybe this explains things for me once and for all. That and I had taken all those years of PPI prilosec, destroying stomach acid, led to my B12 deficiency and could it lead to a niacin/tryptophan malabsorption issue in some?

Sorry for all this - just seeing what you think. You're a very smart lady!

PS - sorry for posting this in the B12 Periph Neruo thread... but i couldn't find one for B3! I know you have one for B6, B12, and somewhere I believe you have one for vitamin D!

[mrsD]

yes, niacin is involved with serotonin.

This article is the easiest to understand, as the chemistry is rather complex and difficult to process:

http://accidentalscientist.com/2009/...es-prozac.html

Nicotinamide or flush free niacin has no side effects. Seems your experiment revealed and important fact for you!

You could have some minor genetic defect that makes you more needy of the niacin. Taking it the way you are is not dangerous or expensive. I have used the NOW brand on and off for years to try and help my "cholesterol" problems...