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Let's talk a little about B12 Deficiency
This information is going to be quite a surprise to some people. I don't intend here to do a whole discussion about B12. You all can look it up in Wikipedia for the backgraound. I just wanted to throw out a few tidbits.
Many symptoms of B12 Deficiency overlap with common symptoms of MS. These are things like tingling in the hands and tongue, fatigue, depression, expression of Bipolar mania, ataxic gait, poor concentration, poor memory.
The currently published levels of "normal" B12 levels from 230 to 1000 are being criticized by many researchers as too low. Even some labs will report a low-normal level and gon on to state that 10% to 20% of people may suffer neurologic symptoms in the range below 400. Some are suggesting the the low value be reset to 550.
The serum B12 level is not the best value to check as it will fluccuate depending on whether a dose of B12 has been taken recently. Two other tests, homocysteine and methylmalonic acid are better and will be elevated in the presence of true B12 deficiency.
It is not known why B12 levels are often low in MS. There is no evidence, though, that low B12 is a player in causing MS. If a person's level is shown to be low, then treatment should begin to raise the level to known healthy values. (see above)
The symptoms in B12 deficiency are generally symmetrical - felt on both sides of the body, though they might not be symmetrical at the same time.
BIG NEWS, GUYS!
It has been shown by study after study since about 1998 that B12 deficiency, including pernicious anemia, can be treated with adequate oral dosing of 1mg (1000mcg) of cyanocobalmin. When the dose is this high, even with a deficiency in intrinsic factor (pernicious anemia) enough is absorbed to correct the problem. Now, I just learned this from my dad's very smart internist. I looked it up in the medical literature and see that he is quite correct. In fact, one study that looked at monthly injections versus daily 2 mg cyanocobalmin showed that the oral was possibly "even more effective" than the injections. News to me!
I have also read, by scientists I respect, that that the methylcobalmin form of B12 is superior. My dad's doctor is not of the type that has much belief in supplements - looking only to science-based data. However, the methylcobalmin tablets (often sublingual) are quite pricey compared to common B12 (cyanocobalmin). If the price is prohibitive for the methy form, then the scientific studies all use 1000mcg of the cyano form with great results.
There has been a reluctance in physicians to switch over to from injections to oral dosing. This intransigence may be due to the fact that for - well, forever - it has been taught that B12 deficiency HAD to be tread with lifelong monthly injections. Or it may be the reluctance to drop a lucrative injection that was covered by insurance. However they have found that about 3/4 of patients were quite willing to make the switch.
Now, how does one distinguish between the symptoms of MS and B12 deficiency? Sometimes it can be hard. I would say that if the level is low it should be brought up no matter what. What irreversible neurologic damage has been done - is done and will remain static. Any new symptoms thereafter are NOT due to lack of B12.
As for the anemia - the anemia will respond to supplemental B12 very promptly. If it doesn't the cause may be a folate deficiency. Proper function of the bone marrow depends on both of these micronutrients working together, so anyone testing for B12 on the basis of anemia should test both folate and B12.
Adequate B12 levels are critical for neuro, mental and for cardiovascular health.
Anyone who reads this stuff about oral replacement being as good as injections and is skeptical as I was just do a literature search. Here is one for google
oral B12 therapy effective
Interesting, eh?
Comments?
Oh, I have put my whole family on the methylcobalmin sublingual.
Quix
Many symptoms of B12 Deficiency overlap with common symptoms of MS. These are things like tingling in the hands and tongue, fatigue, depression, expression of Bipolar mania, ataxic gait, poor concentration, poor memory.
The currently published levels of "normal" B12 levels from 230 to 1000 are being criticized by many researchers as too low. Even some labs will report a low-normal level and gon on to state that 10% to 20% of people may suffer neurologic symptoms in the range below 400. Some are suggesting the the low value be reset to 550.
The serum B12 level is not the best value to check as it will fluccuate depending on whether a dose of B12 has been taken recently. Two other tests, homocysteine and methylmalonic acid are better and will be elevated in the presence of true B12 deficiency.
It is not known why B12 levels are often low in MS. There is no evidence, though, that low B12 is a player in causing MS. If a person's level is shown to be low, then treatment should begin to raise the level to known healthy values. (see above)
The symptoms in B12 deficiency are generally symmetrical - felt on both sides of the body, though they might not be symmetrical at the same time.
BIG NEWS, GUYS!
It has been shown by study after study since about 1998 that B12 deficiency, including pernicious anemia, can be treated with adequate oral dosing of 1mg (1000mcg) of cyanocobalmin. When the dose is this high, even with a deficiency in intrinsic factor (pernicious anemia) enough is absorbed to correct the problem. Now, I just learned this from my dad's very smart internist. I looked it up in the medical literature and see that he is quite correct. In fact, one study that looked at monthly injections versus daily 2 mg cyanocobalmin showed that the oral was possibly "even more effective" than the injections. News to me!
I have also read, by scientists I respect, that that the methylcobalmin form of B12 is superior. My dad's doctor is not of the type that has much belief in supplements - looking only to science-based data. However, the methylcobalmin tablets (often sublingual) are quite pricey compared to common B12 (cyanocobalmin). If the price is prohibitive for the methy form, then the scientific studies all use 1000mcg of the cyano form with great results.
There has been a reluctance in physicians to switch over to from injections to oral dosing. This intransigence may be due to the fact that for - well, forever - it has been taught that B12 deficiency HAD to be tread with lifelong monthly injections. Or it may be the reluctance to drop a lucrative injection that was covered by insurance. However they have found that about 3/4 of patients were quite willing to make the switch.
Now, how does one distinguish between the symptoms of MS and B12 deficiency? Sometimes it can be hard. I would say that if the level is low it should be brought up no matter what. What irreversible neurologic damage has been done - is done and will remain static. Any new symptoms thereafter are NOT due to lack of B12.
As for the anemia - the anemia will respond to supplemental B12 very promptly. If it doesn't the cause may be a folate deficiency. Proper function of the bone marrow depends on both of these micronutrients working together, so anyone testing for B12 on the basis of anemia should test both folate and B12.
Adequate B12 levels are critical for neuro, mental and for cardiovascular health.
Anyone who reads this stuff about oral replacement being as good as injections and is skeptical as I was just do a literature search. Here is one for google
oral B12 therapy effective
Interesting, eh?
Comments?
Oh, I have put my whole family on the methylcobalmin sublingual.
Quix
My Neuro suggested sublingual B12. I use the Trader Joe's sublingual B6/B12/folic acid. He said that was fine. I also take D3 which he agreed with.
He basically said that it was a good thing to keep the levels up, but recurrent Optic Neuritis and Trigeminal Neuralgia were not from the low B12 and D3 levels.
Bob
He basically said that it was a good thing to keep the levels up, but recurrent Optic Neuritis and Trigeminal Neuralgia were not from the low B12 and D3 levels.
Bob
Lisa- i have a chronic burning pain in my feet and have been told it may be caused by small fiber neuropathy (without any cause or explanation as to why). I am un-dx for MS too. Do your feet turn really purple or red?
I HAVE B12 DEFIECENCY AND VITAMIN D3 DEFIECENCY AND HASHIMOTOS (LOW THYROID)i HAVE BEEN HAVING EXTREME PAIN IN MY LEGS AND FEET AND HAVE BEEN BEGGING TO BE TESTED FOR M.S. TO NO AVAIL ONCE I WAS TOLD FIBROMYALGIA NOW I AM BEING TO NUEROPATHY FROM THE VITAMIN B12 AND D3 DEFIECENCY AND i AM GETTING WORSE AND WORSE BY THE TIME i GET OFF WORK I CAN BARLEY WALK AND AM IN EXCRUTIATING PAIN HELPANYONE
Neither animals nor plants can synthesize B12, so it is an essential vitamin and must be taken in supplements. It is also water soluble so your body does not store it to toxic levels.
I believe we all should have extra unless you know you have a great level;.
Raising the recommended normal range is not currently widely accepted. But, I have read too many times that a percentage of the population is symptomatic at the levels between 230 and 400.
I also have noticed a signficant and reproducible difference in how I feel with the added 6000 IU of D3 that I take. I do not beleive that it is placebo, because I had not expectations that it would change how I felt. I was just supplementing in case it might slow the progress of the MS a bit. If I misss the Vit D, I really know it!
Quix
I believe we all should have extra unless you know you have a great level;.
Raising the recommended normal range is not currently widely accepted. But, I have read too many times that a percentage of the population is symptomatic at the levels between 230 and 400.
I also have noticed a signficant and reproducible difference in how I feel with the added 6000 IU of D3 that I take. I do not beleive that it is placebo, because I had not expectations that it would change how I felt. I was just supplementing in case it might slow the progress of the MS a bit. If I misss the Vit D, I really know it!
Quix
Are we able to get sufficient Vitamin B-12 in the foods we eat daily? I have just started on a rather high dose of Vitamin D-3 (5,000 i.u. daily) and already notice an improvement in the way I feel. Just a general feeling of well-being.
From what you have said, I need to look into Vitamin B-12. It seems that it can do nothing but make some physical complaints, diminish.
Thank you so much for these informative posts. Where would we be without your guidance?
Big Hugs,
Heather
From what you have said, I need to look into Vitamin B-12. It seems that it can do nothing but make some physical complaints, diminish.
Thank you so much for these informative posts. Where would we be without your guidance?
Big Hugs,
Heather
I'm cold and running my new fireplace for warmth!
I like the cold, but it makes my muscles stiff and I fatigue faster.
I'ts about 15* here.
Q
I like the cold, but it makes my muscles stiff and I fatigue faster.
I'ts about 15* here.
Q
I just had bloodwork done yesterday. I was interested to see that some scientists think the low should be reset to 550. My B-12 is listed at 500. My folate results aren't in yet.
As well as being prevelant in MS, can low B-12 also be found in the mimics such as fibro? Just curious, as the neuropathy I have in my legs and feet have never been explained adequately to me. My type2 diabetes is under control, my A1C was 5.6 with EST ave glucose was 114. I am also awaiting the results of the Vit D, ANA, and HLA-B-27.
Is there a natural way to increase B-12 besides shots or pills? I'm horrible at taking vitamins.
Hope you are staying warm. It's 3* here!
Maggie
As well as being prevelant in MS, can low B-12 also be found in the mimics such as fibro? Just curious, as the neuropathy I have in my legs and feet have never been explained adequately to me. My type2 diabetes is under control, my A1C was 5.6 with EST ave glucose was 114. I am also awaiting the results of the Vit D, ANA, and HLA-B-27.
Is there a natural way to increase B-12 besides shots or pills? I'm horrible at taking vitamins.
Hope you are staying warm. It's 3* here!
Maggie
COMMUNITY LEADER
It is interesting, and another conundrum, I can say i've been borderline or anemic since I started menstruating (late starter almost 16) which i only found out about because of having glandular fever, so if I was anemic before that i wouldn't know. Does anemia have anything to do with a child that is seriously little (hight and weight) for their age or a child that turns blue & passes out (unknown cause, no crying etc before events), up to the age of 10?
In my mid 20's, I was still borderline or anemic and started taking Iron supliments, though i was constantly dealing with chronic farengitus (sp?), years of this and i ended up with periods of staring into space zoned out, weak from loosing weight due to not being able to swallow, in the end i had my tonsils out age 29.
In my 30's. i ended up being folate and B12 deficient and had B12 injections every week for about 6 weeks, whilst taking Iron and folate supliments. Checked levels every time i went to the dr, always borderline from what i remember. When i was in my late 30's and i'd collapsed, i was taking multi vitamins, still borderline but high WBC.
Since that time every blood test i've had i'm told i'm borderline anemic and have a high WBC, accept the last tests back in April, then i was asked if i was taking anything because my iron levels were so high, i wasn't and i'd not been able to eat meat due to a horrid absess. I had expected to be told i was again anemic and even why i was getting worse every year when i was following drs orders and still having these stupid episodes.
Ok after all that, is it still possible to finally have blood tests that indicate i'm not anemic (high enough for Dr to question if i'm taking Iron) and having the worst fatigue i've ever experienced and all the seemingly neurological sx on top of it but still be anemic and in need of B12? I would love this all to be because of B12 oh would i love it!!
Cheers....JJ
In my mid 20's, I was still borderline or anemic and started taking Iron supliments, though i was constantly dealing with chronic farengitus (sp?), years of this and i ended up with periods of staring into space zoned out, weak from loosing weight due to not being able to swallow, in the end i had my tonsils out age 29.
In my 30's. i ended up being folate and B12 deficient and had B12 injections every week for about 6 weeks, whilst taking Iron and folate supliments. Checked levels every time i went to the dr, always borderline from what i remember. When i was in my late 30's and i'd collapsed, i was taking multi vitamins, still borderline but high WBC.
Since that time every blood test i've had i'm told i'm borderline anemic and have a high WBC, accept the last tests back in April, then i was asked if i was taking anything because my iron levels were so high, i wasn't and i'd not been able to eat meat due to a horrid absess. I had expected to be told i was again anemic and even why i was getting worse every year when i was following drs orders and still having these stupid episodes.
Ok after all that, is it still possible to finally have blood tests that indicate i'm not anemic (high enough for Dr to question if i'm taking Iron) and having the worst fatigue i've ever experienced and all the seemingly neurological sx on top of it but still be anemic and in need of B12? I would love this all to be because of B12 oh would i love it!!
Cheers....JJ
I take B12 shots to assist with my fatigue and I find they help. Interestingly enough I went back and ck my initial levels and they were 440. That was in 08.
Something you said though gave me an ah ha moment.
What irreversible neurologic damage has been done - is done and will remain static. Any new symptoms thereafter are NOT due to lack of B12.
I had wondered if gluten was the culprit in regards to my neuro symptoms but my symptoms are not static and recently I began having trouble remembering things that would be filed under my long term memory. I know they are there. I have partial recall but not detailed recall. Interesting stuff Sherlock and I mean that as a compliment.
terry
Something you said though gave me an ah ha moment.
What irreversible neurologic damage has been done - is done and will remain static. Any new symptoms thereafter are NOT due to lack of B12.
I had wondered if gluten was the culprit in regards to my neuro symptoms but my symptoms are not static and recently I began having trouble remembering things that would be filed under my long term memory. I know they are there. I have partial recall but not detailed recall. Interesting stuff Sherlock and I mean that as a compliment.
terry
This is very interesting to me since my grandmother had pernicious anemia and it is largely hereditary. I had strongly suspected that my sensory disturbances were cause by PA. I've been tested for it twice, don't know what tests were used. Last time my B12 level was 400, which according to the Quest lab report, fell well within the normal range. I didn't know that this is now considered on the low side.
In any event, from what I've been able to learn, one way to distinguish a B12 problem from MS is that there are no relapses and remissions with low B12. Early in the game I had several long periods of no symptoms at all, so that pointed away from B12 deficiency due to lack of intrinsic factor.
ess
In any event, from what I've been able to learn, one way to distinguish a B12 problem from MS is that there are no relapses and remissions with low B12. Early in the game I had several long periods of no symptoms at all, so that pointed away from B12 deficiency due to lack of intrinsic factor.
ess
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