B12 or MS ?

[Alex]

My Wife has had her B12 serum test come back at 170pg/ml about 6 weeks ago. This was after she had optic neuritis (vision is still blurry) in her right eye in July. She has also developed fatigue, numbness in her legs, feet & back. She already had numbness/tingling in her hands since the birth of our last child 2 yrs ago.

Her Doctor & Neurologist don't seem too concerned with this B12 level. The Neurologist says it can't be causing the symptoms because her red blood cells aren't enlarged and it wouldn't cause the vision problem anyway. He reckons it's more likely MS.

She has been a vegetarian for over 20yrs. She also had a blood test for intrinsic factor which came back ok. Since the doctor doesn't seem in a hurry to start her on injections I bought Jarrow 1000mcg sublingual methylcobalamin 4 weeks ago. She has been taking 2 a day for 4 weeks but if anything she feels worse and still fatigued. Is this normal ? I thought the fatigue may have at least eased. If the B12 deficiency is causing these symptoms how long should it take to ease ?

Her MRI was inconclusive (two tiny white spots), she has had lumbar puncture and visual evoked potentials done but still waiting on the results.

She spoke to her doctor today and instead of going ahead with the injections the doctor has prescribed 50mcg Cyanacobalamin tablets to be taken three times a day !!!!

Any inputs greatly appreciated

Alex

p.s. we are in Sunny Scotland

[annelb]

It is obvious that your wife's doctor knows nothing about B12 :(

I have to run, so I don't have time for the long answer. I want to be sure that you have seen the link to Rose's site for B12 http://roseannster.googlepages.com/home

I have heard many people mention that they worsened before getting better after starting B12. Have other vitamin deficiencies been checked?

Anne

[rose]

I don't have much time either. Please read my website (under construction, so much more to come). And then I will be happy to answer questions.

Please post questions to this same thread so we can keep the history and all in one place.

Best wishes, and good for you giving her 1000 mcg.

http://roseannster.googlepages.com/home


rose

[Alex]

Thanks for the replies. I have had a look at the website and it confirms what I have already read on other sites. We also have just bought the book, Could it be b12 ?

I guess the thing that leaves us stumped is how this neurologist can make these statements about having to have enlarged red blood cells and b12 not being able to cause vision problems/loss. I mean this isn't just any neurologist, this a top consultant neurologist. We where refered to him through our local Nuerologist.

You start to feel a bit doubtful of the things you have read when someone like that is so definate in their statements.

Because he has more or less dismissed my Wifes b12 level being the cause of her symptoms and also because the Jarrow methyl b12 has had no effect so far in 4 weeks, except to make her feel worse and even more tired, it is making my Wife doubt that this is indeed the cause.

It just seems like so much of a coinicidence to me with the symptoms, her b12 level being so low and her long standing vegetarianism.

The sad thing is she only got her b12 serum level tested because I made her go to her doctor and insist on the test. When she was in hospital they only tested her for pernicous anemia and because that was fine went no further.

Any ideas why the b12 makes you feel even more tired ? I took a couple and it also made me feel tired almost immediately !!

Hopefully the further tests for MS will come back negative.

Can b12 deficiency cause mri abnormalities ? Not that hers was abnormal but she is to get an mri of her spine soon.

Alex

[mrsdoubtfyre]

but then I am not severely deficient either.

I take mine at night when I go to bed on an empty stomach.

Anything less than 1,000 mcg/day orally is not effective.
It only costs 9 cents a day. Why would anyone use smaller doses?

After 20 yrs of vegetarian eating with no animal protein, would have exhausted the liver stores. Some of the oral used now, would be stored, I would think.

It takes TIME to correct metabolic problems..they take years to show up and do not go away with a few doses...of correction. Your wife is looking at a long healing haul. One must be patient.

I would suggest some MetaFolin (methyl folate) and B6 to go along with the
B12. This would help, I think.

There is an RX version of all 3 the neurologist should know about it:
Metanx.
here is the website:
http://www.metanx.com/

[rose]

it is called "combined degeneration" or "subacute combined degeneration." And serious symptoms can occur before lesions will show on MRI.

If she has been a vegan for many years that could account for deficiency even if she does not malabsorb. Or, of course, she could malabsorb and still test negative for intrinsic factor antibodies. The test is not 100%, a person can still have intrinsic factor and malabsorb less severely for other reasons, etc.

If she malabsorbs moderately or slightly, she will absorb from a smaller dose of B12. But there is no reason to risk it. 1000 - 2000 mcg is the medical textbook dose, to cover the possibility that the person is or will malabsorb severely.

Most doctors are decades behind on the B12 issue. Even prestigious ones. That is why I spend my time spreading information.

rose
http://roseannster.googlepages.com/home

[Alex]

Would there be any point in her also taking the 3 x 50mcg Cyanacobalamin the doctor has prescribed in addition to the 2000mcg methylcobalamin daily ?

Just wondered if it may help the fatigue, if the fatigue would go it would make such a difference.

Alex

[jamietwo]

Alex, I am going to post my experience in case it might help your wife. I was diagnosed with Lupus in 1999 (I like to think I was misdiagnosed - I had some funky blood work). I started eating a vegan diet 6 years ago. I eliminated gluten from my diet nearly 2 years ago, which initially helped my fatigue, but not for long. I was also borderline anemic for a few years. After reading Rose's info on b12, I started supplementing with 1mg methylcobalimin, then upped it to 2mg each day. I started using Floradix iron (gluten-free). Then, more recently (within the last few months), I started taking a B-complex and a calcium/etc vitamin. I honestly believe that my gluten sensitivity caused me to malabsorb my nutrients, and I wasn't taking vitamins because I believed that people eating an organic, whole foods, plant-based diet shouldn't NEED vitamins (although I did supplement with minimal doses of b12 all along). I am thrilled to report that my energy has finally returned! I believe it is due to the combination of things I noted (eliminating gluten, taking B12 and other vitamns). I am so grateful to feel good again!

ETA: I should probably mention yoga as another possible contributing factor to my renewed energy. I have been practicing yoga for a few months now, and I would add it to my list of things that has helped me. :)

[rose]

But taking the 50 mcg wouldn't do any harm. I wouldn't bother.

If there is any chance of one working better than the other, the one that will work better is the methylcobalamin. In addition to the fact that 50 mcg is a stupid dose.

Yes, severe fatigue is a terribly life-altering thing. I know personally. Probably there is no quick fix. I would cover the nutritional possibilities and take the methylcobalamin. She might also want to take a good B complex (at a different time of day). Good just in case something else is low.

Jamietwo :)

rose

[orthomolecular]

I just wanted to comment on jamietwo's comment:

...I wasn't taking vitamins because I believed that people eating an organic, whole foods, plant-based diet shouldn't NEED vitamins (although I did supplement with minimal doses of b12 all along).

Unfortunately there are a number of nutrients missing from a vegan or mainly vegatarian diet. Some of these nutrients that are commonly known about are zinc, iron and b12.

But one important but less known nutrient missing in a vegan diet is sulfur which is mainly derived from the sulfur-containing amino acids (SAAs). Vegetarian protein sources like beans contain low levels of SAAs.

Another possibility is that not eating animal protein may also create a taurine insufficiency. Vegetarian proteins do not contain any taurine at all. Taurine is not an essential amino acid (EAA), but is considered conditionally essential. So, if there are any other problems, say a vitamin b6 deficiency, then taurine will not be derived in the normal way (your body converts methionine into cysteine then cysteine into taurine). (And taurine is actually a nuerotransmitter.)

The point I am trying to make is that when you make big changes in your diet (by eliminating animal protein) you may not realize all of the consequences of these changes. One missing nutrient may have a cascading effect which may end up contributing to another possible deficiency as well. And sometimes it is not the obvious (or less obvious) vitamins or minerals but amino acids too.

And getting these deficiencies corrected may not be that easy because a qualified healthcare professional trained in a nutritional approach is not that easy to find.

There are nutritional benefits to consuming animal protein. I am not saying you should base your choice of diet on this, but I would hope that you would be informed of the nutrients and amino acids that will be lacking in a vegan or mainly vegetarian diet.

[jamietwo]

Orthomolecular, I dare say I can find as many studies promoting the health benefits of an organic, whole foods, plant-based (vegan) diet as you can find against it.

[orthomolecular]

I never took a stand for either type of diet. I was making the point that if someone changes their diet in a dramatic way, like removing all animal protein sources, then it needs to be done with the necessary information.

Where someone gets that necessary information from might be a limited because most doctors don't not have much knowledge of nutrition, nor do most doctors routinely check for nutritional problems. Nutrition is not really, in my opinion, a part of our healthcare system. So, to emphasize that point again, you may be on your own when it comes to dealing with your nutritional concerns from any serious changes in your diet.

[Alex]

Is it possible for B12 deficiency to cause Oligoclonal Bands to show up in Lumbar Puncture results ?

We haven't got the results yet but the Neurologist said previously that all the Lumbar puncture may till him is that there is inflammation in the nervous system.

Alex

[rose]

B12 deficiency can cause inflammation in the central nervous system, and thus can cause oligoclonal bands.


From Goldman: Cecil textbook of medicine

in a chapter discussing MS:

"CSF OCB [oligoclonal bands] are also observed in patients with CNS [central nervous system] infections or inflammatory diseases and occasionally in patients with tumors or strokes."

rose