Vitamin B12 Deficiency or MS?

Everyday living
21

Not gate crashing at all.

Yes, the supplement you took will skew blood tests.

I’m reluctant to give figures, because I can’t find the research paper on it, but I looked at one study a few months ago and it was a very new study, that proved serum b12 levels could be pushed into the normal range by something as small as 3mcg? per day over a 10 day period.

And I also try and use the terms supplement and treatment interchangeably, because if you consider that the first ‘treatment’ was getting patients to eat 1/2lb of raw liver per day you can see that there is little difference between injections, tablets or food. Admittedly, the food end has to be extreme, but not to alter blood levels.

So, the serum b12 test as a diagnostic tool, can actually be damaging rather than helpful.

Yet many of the research studies rely on this method to select groups.

Yes, MCV is an indicator of b12 deficiency. And I also have started to see suggestions that the top end range is lowered. My MCV in 1991 was 99.

However, any blood test that would be an indicator of b12 deficiency is skewed after supplementation or treatment.

We are literally here having to go back to basics. We are having to learn to go back to what Murphy and Minot did. They knew the bloods were simply a ‘possible’ symptom. They knew they were rectified easily. But they also knew the other symptoms, the physical ones - the ones that get ignored today or attributed to another illness. What they did was treat each patient according to the physical symptoms.

Folate deficiency can cause the same symptoms as b12 deficiency, but they are easily reversed. However, if you have a masked b12 deficiency (as in you are taking enough b12 to rectify the bloods but not the physical symptoms) and take folate on top, all that happens is your bloods become ‘more’ normal, your homoscysteine comes down (making it more normal) but the cellular damage continues.

There is no easy answer to this.

It’s like me asking “what causes MS?” They can tell you how they currently identify it. They can tell you what the symptoms are. But they have no idea what causes it.

What we need to understand is that b12 deficiency is no less debilitating or fatal, than b12 deficiency. Once we understand that, and once we understand how similar they are, then patients have a better chance of getting an accurate diagnosis.

One way that you can ascertain a possible cause of b12 deficiency is to have a test for hypochlorhydria or achlorhydria. It has long since been known that low stomach acid is a cause of malabsorption issues. If you have either of these, then you can’t be absorbing b12 properly.

22

Thanks for this very interesting feedback, Karen.

Definitely food for thought.

Astro

23

Yes I watched the film. I get vitamin b12 injections every 4 weeks. I’m under many different specialists for many different things at the moment but they’ve all said that a b12 deficiency doesn’t cause oglioclonal bands and there’s lots of research on oglioclonal bands and the causes of them. It has to be an autoimmune condition that travels through the csf independently from the blood - vitamin b12 deficiency is shown through blood not csf.

24

Hi Karen,

I am fasinated with this post. I have been having problems since 2005 with no real concrete Dx yet. In 2005 I had an attack of numbness in left arm. No bloods were taken but an MRI and LP was clear. Then in 2008 numbness again and weakness. No bloods taken again. In 2009 a very slow progression of foot drop started to develop. In 2011 I saw a neuro and had MRI and lesion was seen in spinal cord with cord atrophy too. No bloods were taken and Delayed radiation myelopathy was dx (from treatment in 1990). He also suggested getting B12 injections (every 3 months) to see if that helps - never got the blood test though) but got the B12. In 2012 I saw another neuro (NHS this time, 1st was private) and he thought MS and delayed radiation myelopathy impossible. After another clear brain scan and a LP with no MS bands he couldnt give me the MS dx but still thought that DRM is impossible. I then bought the B12 book and asked to be tested (NHS doctor poo pood my request). Anyway I got the test at the hospital consultation although in the GP surgery that morning I had the B12 jab! Anyway I told him this and he said it would make no difference.

Anyway my question is - if I have been having the B12 jabs every 3 months and not improved does this mean it is not B12 deficiency. I have also been taking a multi B vitamin tablet daily.

Also when I went to a natropath see did some test for me (holding rods attached to a computer) and a B12 issue was highlighted even though I was taking the jabs and B vitamins.

I reckon that everyone gets a LP because the Porf G at the Barts doubts MS with clear LP. Sure B12 defiency would not give bands in the CSF fluid.

What type of consultant will diagnose B12 defiency and treat it?

Moyna xxx

25

Yep, I know they say a lot of things about b12 - most of them are incorrect. I’ve got some emails from consultants that are talking the most ridiculous nonsense that I’ve ever seen. Including the fact that you still need anaemia. I would think after the release of the film a lot of them are losing sleep over those emails.

Experience has proven that we have to look at the research. Believe me, I actually want to see it. I want to see how they identify groups, whether they use MMA or serum b12 or whatever to get base lines.

You see, that last line you wrote, to me, doesn’t make sense. Only in the fact they choose to diagnose b12 deficiency this way. B12 deficiency is also an autoimmune condition - it can have several causes.

If you saw the film you will realise the problems with the serum b12 test. You will also realise the problems with the doses they give.

Look at it from this angle - including taking into account research studies and establishing base lines. In Japan, it is said that anyone with a b12 level under 500 is considered deficient and treated aggessively.

Then go look at the stats for MS in Japan. Then they will tell you that the Japanese have a different biochemistry and a different diet. But since we are taking malabsorption the diet shouldn’t come into it.

What if we decided to simply raise the lower end levels to 500 and treat aggressively. Would our MS cases fall?

What difference would it make to study groups if the base line of b12 deficient MS patients was raised to 500. How many would also be deficient?

26

I appreciate the fact that b12 deficiency is also an autoimmune condition but there’s still no escaping the fact that is shows in blood and not csf so therefore oglioclonal bands aren’t present in b12 deficiency.

27

Sorry about the delays in my postings my server is garbage!

Hi Moyna,

It is so difficult to get over the myths that have developed over the years. It’s a nightmare.

A b12 jab every 3 months is going to do diddly in respect of stopping deterioration or repairing damage.

B12 has a short half life and it has been shown quite recently that what you take in you will absorb the maximum within 3 hours.

If I had to go 3 months without a jab…I’d probably have a stroke first.

I didn’t have my b12 the other week and my neighbour was getting very concerned at how pale I was looking. I felt dreadful, my feet were freezing, my muscles were jumping, I’d got tremor and my concentration was very poor and I’m still recovering from that side of it.

The day after I jabbed myself, the neighbour reported how much better I was looking - but she didn’t know I’d had a jab.

Again, of course it would make a difference to a blood test if you had a jab. I mean, look at diabetics.

In your case, it’s like the majority of b12 patients - they don’t get enough to affect nerves and cells - just blood test results. And the reason they don’t get it, is that doctors really, really, don’t know what b12 deficiency does.

They really don’t know. And once they read a normal b12 serum level, they pronounce that illness treated. They don’t look at the damage caused when you were deficient. They look for something else.

A supplement, like a multivit, will simply raise serum b12 levels. That’s it.

In the film it states that if you are taking b12 orally then 1,000mcg per day is the minimum dosage.

28

Thanks Karen,

How do I go about sorting this out with no real help from the doctors?

Do I just try 1000mcg orally per day myself or try patches - I worry that because I had the radiation it is easy to blame.

I have read that B12 defiency lesions are usually seen on the spinal cord and that symtoms follow a more PPMS (ie slow progression) route rather that RRMS (sudden attacks). Did you have lesions on your spinal cord ?

Thanks so much for your help.

Moyna xxx PS I met a man who had been DX with PPMS for 10 years (turned out he had B12 defiency)

29

There do seem to be a lot of us with MS who are also dx with low vitamin b12 (I have just had my 12 weekly b12 injection this morning). I expect that many of us found out about our low b12 levels the same way I did - i.e. it is the obvious thing to check first when someone presents with strange neuro symptoms (simple blood test, easy to fix, what’s not to love?)

So, is the incidence of low b12 (as opposed to dx of low b12) REALLY higher among the MS population than in the general population, or is it just that we are overwhelmingly more likely than the general population to know what our b12 levels are?

If anyone has any thoughts on this, I would be very interested.

Alison

(BTW, I do definitely have MS as well!)

30

My GP just about fell off his seat when I asked for B12 injections, I asked because I learned about all the “potential” positive results one can get from this treatment and discussed this with him, but I was asking for something that’s classed as an “off label treatment” and nobody wants to take responsibility for something like that even though there are very little risks or side effects to B12, also tests came back and I was not B12 deficient, although I think the measurement levels the NHS use are outdated.

After 12 months of fighting my case with the neuro team, they finally agreed to support me on this, and wrote to my GP to say this but stated they did not believe it would have any beneficial help. They’re knowledge was based on the Cari Loader theory, and i hadn’t heard about this.

5 months in, it’s not improved my memory, concentration or walking ability as I’d hoped, but I certainly have more energy, better sleep, mood and I continue to get my monthly injection.

The jag its self is not painful in the slightest (for me) but it does have a MINUTE sting for around 5 seconds.

Just thought i’d share my personal experience on this as it was a difficuilt and long winded process to actually get it prescribed.

– Also, last week my friend told me lots of healthy celebrities take B12 injections nowadays too, google it, I found that fascinating!

31

What you have to remember is that once you start taking b12 supplements it will wipe out any evidence of a deficiency on your blood test results.

Also, if any damage is caused by b12 deficiency, repair depends on the severity and length of the deficiency.

I would very much doubt if you could get a doctor to support supplementation but by the same token I doubt if you would get a doctor to confirm it would do you any harm.

You can buy tabs on the net. I can’t comment on the other stuff like patches, sprays etc, because I’ve never used them, but the tablets/lozenges are freely available in 1,000mcg form. The most recommended kind of b12 is methylcobalamin.

There is no law against buying them, so you aren’t doing anything wrong.

If you do get any improvements, then your doctor will just attribute it to coincidence anyway.

Or, you could move to Japan and see what they do there. Okay, so maybe a tad extreme…

32

Sunshine, you can’t just tell me it doesn’t show in CSF, you have to point me to the research. B12, as I have been writing, does not always show in bloods. It is not the best diagnostic technique. The studies aren’t all over the internet, I can’t find them. I need to know more before I just take the statement at face value.

I really don’t care what the medical professionals ‘say’ - because I’ve emails here from ‘specialists’ that tell me b12 deficiency is only serious if accompanied by ‘severe’ anaemia. MYTH.

It’s a load of codswallop. Sorry Stewart, frustration with doctors not Sunshine.

Yesss - how often do you get the jabs and what kind of b12 (just out of interest)

33

Ooh, I do wish there was an edit facility.

When it comes to whether MS patients have a b12 deficiency - again we are back to the serum b12 test. This test is very specific for b12 but it only shows up the b12 in the blood. It also picks up inactive b12 - b12 that cannot be transported to cells.So, the figures state that this test can be between 20 - 80% inaccurate.

So, you get two people with MS going into a study. The normal assay range is say 200-700. One has a serum b12 level of 199 (deficient) and one has a serum b12 level of 201 (not deficient)

Yet that test can be up to 80% inaccurate in ascertaining whether that non deficient person has a functional b12 deficiency.

We know now, and the film is showing this, that there are warnings going out (not in Europe) to doctors to not disregard b12 levels if they come into the grey area and the patient is symptomatic. So, someone with a level in between 200-400 who has symptoms, should be treated as if they are deficient.

Are they doing that. No.

Again we can go back to Japan. How many MS patients would also be considered to be b12 deficient when deficient would be classed as being less than 500?

Or to look at it another way, do they have fewer MS patients because b12 is tested earlier and patients are treated with b12 sooner if there levels are below 500?

34

They’ve done studies on oglioclonal bands - if you search the internet for causes of oglioclonal bands you will find lots of evidence

35

Its Hydroxocobalamin B12 every 4 weeks, do you know if this is good, bad or unusual?

You seem very passionate and knowledgable about this, how long have you been on B12 and have you noticed any benefits since starting?

36

Its Hydroxocobalamin B12 every 4 weeks, do you know if this is good, bad or unusual?

You seem very passionate and knowledgeable about this, how long have you been on B12 and have you noticed any benefits since starting?

37

Yes the have but not comparitive to b12 deficiency.

And again, I state, you have to see all the studies to see how they established their base line. If you give me a link to one of these, I will be more than happy to read it.

But if they are simply using serum b12 then the studies aren’t worth the paper they are written on.

If these doctors are so sure of themselves. If they are so up to speed on what b12 deficiency does and it being a demyelinating illness and sure that the treatment they are giving is correct - why aren’t they commenting on that film?

Why aren’t they saying it’s a load of rubbish? Why aren’t they putting forward contra-evidence? Why aren’t they coming forward with these studies and linking to them?

It’s now had over 70,000 hits. I’ve sent it to numerous clinicians and asked for comments. I’ve only had one response - and he agreed to alter his website after watching it.

In short they either don’t bother to watch it (because they think they know it all) or they do watch it and are stunned into silence.

It’s amazing how many people don’t watch it and then make out that they have. I’ve got an (ex) friend who keeps doing this. It’s quite obvious he’s lying … but I just let him. He’ll watch it one day and realise what a fool he was making of himself.

Sunshine, if you want to comment on any of the aspects of the film, I’d be pleased to hear it. I’m always interested to hear what queries people have, what problems they have with, what message isn’t getting across.

38

Yess - in the UK that is more than patients would normally be allowed. They normally get it once every 3 months.

In most of mainland europe that would be the standard maintenance dose for someone not having neurological implications.

In the UK the BNF (British National Formulary) states that for suspected neurological implications you should get every other day injections until there is no further improvement.

However, since doctors never attribute neurological implications to b12 deficiency (I am sure you will be aware of this after your tussle with the authorities) then no one ever gets this frequency and doctors look for another cause of the neuro implications.

I self inject, I use methyl. Have I noticed any improvement? Yes. I’m not dead.

I can’t give you any more information than that at the moment. Sorry.

39

Dear Karen2

Just another (and final) reminder that members should avoid: “multiple posts on the same subject”.

I feel, it’s safe to say, you’ve made your point, at length and with increasing gusto. As you have pointed out-

“I’m not dead. I can’t give you any more information than that at the moment. Sorry.”

In that case, it might be time to try another subject- anything, other than B12. Or maybe engage with other members in an understanding and supportive way (without mentioning b12)- which is best practice for this forum.

Your co-operation with our guidelines would be much appreciated

Stewart (admin)

40

Also, Sunshine, I think I should make it clear - I am not out to prove that MS doesn’t exist or that everybody with MS is b12 deficient.

What I do know is, for a fact, that b12 deficiency in some cases is being misdiagnosed as MS. Since untreated b12 deficiency results in death, then if you have one member on here that has been misdiagnosed, surely their life is worth a little effort?

That is why I say to you that I want to see the research. I’m not being difficult, I just want to establish the facts. And, because I have experienced the medical profession making a multitude of mistakes, I examine the evidence. I no longer believe what they say to me until I’ve studied it myself. Because what I do understand is b12 deficiency and I can pick up basic errors in a study - failures that undermine a study to render it worthless.

If we are looking at evidence and causation then we have to sift the wheat from the chaff.