Vitamin B12 Deficiency or MS?

Everyday living
1

Okay, I’m trying again with a new thread.

I’m not going to put a link in, but I am going to recommend members watch a documentary film on Youtube titled Diagnosing and Treating Vitamin b12 Deficiency.

I had b12 deficiency but was nearly diagnosed with MS.

If you thought you knew about b12 deficiency and you thought your doctors knew, you were wrong.

If you do watch it, try and watch all of it. It’s not about vegetarianism. It’s not about dietry deficiencies - although they do mention it. It’s about malabsorption, demyelination and how it is overlooked.

Let’s see what happens with this posting…

2

Dear Karen2,

Apologies for the confussion over your posts. There has been a bit of a staffing shortage which hasn’t helped with administration. Due to consistent, ENORMOUS and costly problems with spam (that continue to this day)- there is a fairly strong filter on any posts that might appear to be spam.

Some mornings, myself and the mods are faced with hundreds of posts which need to be verified & approved or deleted & blocked. The spammers use ever devious ways to avoid being blocked- which can make the admin of this task quite tricky and time consuming.

In amongst the swathes of spam about kitchens, were your repeated posts about B12. At first glance they appeared to be obvious spam- there are many companies who try to spam our boards about supplements/designer handbags/Rolex watches…so they were deleted.

The fact that you had only ever posted about B12 and nothing else, over a period of time added to the suspicion that these were not posts from someone who wanted to use the forums in a usual way.

Apologies for any distress this may have caused you, but I will also take this opportunity to remind you that in our House Rules- it states that members should avoid: “multiple posts on the same subject”.

Kind regards

Stewart (admin)

3

Karen,

Thankyou for this - l am always ‘banging on’ about vitb12 - l have the books on ‘Could it be B12’ an Epidemic of Misdiagnosis. And l think you must be the same Karen who helped before on this so important subject. We need constant reminding of vitamin b12 deficiency. Once the thread has fallen off the page - l think it gets forgotten.

Most users of this forum - do trust their GP’s/Neuros - l do not - and never have. ln 31yrs of SPMS - l have learnt that you need to be your own expert. As brilliant as our NHS is - it can take them years to make changes - and they never never admit when they have got anything wrong.

Your help is most welcomed.

F

4

Thanks Stuart - I appreciate you do get spamming issues and I only do post about b12 because I know the message has to be gotten (is that a proper word?) across.

Spacejacket - Yep, I think our paths have crossed before. It’s wonderful now that we actually have up to date film of what effects b12 deficiency can have (and they are only a few) This way patients can see with their own eyes what it actually does. I know for certain that most people (and I am including medical professionals in this category) actually think of b12 deficiency as being a minor illness when it clearly is not.

One of the problems is in that most b12 deficient patients get their illness identified when it is still in it’s infancy. So, they all think that having b12 deficiency means being a bit tired and having a sore tongue. The remainder rarely even get tested and so they, like the doctor in the video, deteriorate to the point incapacitation. Even if they are tested for b12 deficiency along the way, once an injection has been given the serum levels return to normal and because doctors don’t understand the nature of the illness or the limitations of the test, their symptoms continue to deteriorate and be of ‘unknown cause.’

The patients in that video are not rare - they are only rare in the sense their b12 deficiency was picked up on and treated properly before they died. We are so lucky to have David Carr and Harvey Barnett to speak up and say as medical professionals they got it wrong and other doctors are getting it wrong.

Everything should stand up to scrutiny and every thing should be scrutinised. We can’t ignore what the experts of the past found simply because the medical professionals of today don’t want egg on their faces.

5

I saw it a while ago Karen and it’s a very good film.

I found it quite scary that the addition of vitamin supplements to some common foods (i.e.breakfast cerials) can mask the deficiency in routine testing for anaemia.

I wonder how many people out there with, for example, an ME/CFS diagnosis, are actually suffering from something like this?

Mags x

6

When l asked my GP if l could have B12 injections - l was told that they are only for MS patients who are on DMD’s. So l have been supplementing myself. l have used a spray -and crystals that you put into water. But now l am going to try the patches. l look for methylcobalamin sub-lingual. Most of these supplements do have all of the B vitamins.

l was surprised to find out how many of my friends are taking meds for stomach acid. ie Omeprazole. These meds will deplete your vitamin b12.

And as Mags has so rightly pointed out - cereals that are fortified with B vits can make your ‘blood test’ look within the normal range. This term that our GP’s stick so religiously to always make me smile. lts there way of saying ‘the computer says no’.

Same happened when l asked for a blood test to check my levels of Vit D3. ‘Within the normal range’ - so l asked for the actual number - which turned out to be 23nmols. They were adding the vitd2 level and the vitd3 level together. Now l get my d3 levels checked by CityAssays. Still l am only 98nmols.

Karen we need your expertise on this site. So l hope Stewart will recognise how much you are only trying to help us.

lts not an easy subject to understand - which is why our GP’s are not aware. So if you - Karen - can explain it to us in laymens terms l am sure it will help us enormously. l understand that you cannot ‘overdose’ - as that has been one of the queries with some people with D3. The effects of being deficient in either vitamin is by far worse then taking too much.

7

Hi Thank you for this post. I found the video very interesting. My neuro prescribed monthly b12 injections as well as ccopaxone and I was wondering whether to continue with them as it is a pain having to take time of work each month to go for the injections but after watching this I will definitely carry on Gina x

8

Could I ask as I posted awhile ago as I had a b12 test and the results were apparently twice as high as they should be. I have been using b12 tablets that dissolve and eatting foods daily with b12 in and everyones panicking as my levels are so high. Thanks zoe

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Just looked b12 is 1826 post back on page 5 and no one answered so unsure what to do many thanks zoe

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Thanks to all of you and I really hope it helps.

I read the posts on here and my heart bleeds. I had nearly all the symptoms mentioned. I can go from pins and needles to numbness, to lack of concentration, to forgetfulness, stumbling, to blurred vision to blind in one eye, to freezing cold (and believe me, in the end, you do go freezing cold permanently) to not being able to lift my arms even to wash my own hair. The list is absolutely endless.

I just walked a different route to you lot.

The masking thing is a nightmare, not only in respect of folic acid fortification, but in iron deficiency. I couldn’t get anyone to check my ferritin levels until 6 months after I began taking b12 because they said my RBC was normal. Yet 6 months after diagnosis and I’d been supplementing with iron, my ferritin level was still depleted. So it looks as if I was very iron deficient at the time I was undiagnosed but the iron deficiency combined with the b12 deficiency had masked the anaemia.

I believe that anyone who goes to a doctor with suspected neurological symptoms should have extensive testing in respect of b12 deficiency and the possible causes (including achlorhydria and hypochlorhydria) before they even consider ruling it out.

Even if they gave patients such as this b12 for a week or so, patients would know if that was the cause because they usually see some kind of improvement. They could give you this while you are sat on a waiting list to get an MRI or see a neuro or whatever. The question has to be: why not?

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Sorry Zoe, I missed your posting as my server is playing me up when I’m trying to load pages.

A high b12 level without any supplementation at all is very unusual although there are some illnesses that can cause it.

A couple of questions:

What is the dosage of b12 you are taking and how often are you taking it?

What was the normal range of your b12 test (it’s usually something like 180-700) and did it actually give the figure of 1826 (although you are being very specific!) because some only go up to 1500+ (the majority) although others do go up to 2,000+.

Hi Jennifer,

This is so difficult because I’ve never met a medical professional yet (in the flesh) that believed b12 deficiency was anything other than trivial.

On my good days I like to give them the benefit of the doubt - they aren’t trained in it. In the video the doctor says he had half a lecture and I’ve actually seen a medical training video that lasted about 15 minutes and was a cartoon. And it included anaemia.

Tread carefully. Ask something specific about b12 and it being a demyelinating illness. If the response is that it’s no problem and you just have an injection every 3 months and your serum levels are okay so ‘no problem.’ Then you will know that these facts are not correct.

Bear in mind that in most of Europe b12 injections for maintenance are given monthly, it’s the norm. And we know that serum levels mean diddly squat once treatment has commenced.

I’ll not deceive you, this is not an easy path or an easy sell. Most doctors can’t even begin to contemplate that they have been getting it so wrong for so long.

12

…and I just realised I can’t edit. But, you are aware that back in the 60’s MS patients used to get a b12 injection monthly?

That was when it was cyanocobalamin. When they changed to hydroxo the maintenance for b12 patients and MS patients was extended to every 2 months. It was then extended to every 3 months when at least one report was written about how much money could be saved on nurses time travelling to give patients injections (that was when the nurses used to do more home visits)

I don’t believe there has ever been a study on the effects on patients to validate that these extentions were not detrimental to the health of patients.

13

Well at least my surgery is on it, when I first mentioned I had a few difficulties walking late last year, the GP ordered a B12 check with my bloods. I somehow forgot about that as I had awful tummy troubles and that was my main issue at the time! I think I had my first big fall about a month later and thats how the MS ball started rolling.

I still take a supplement now even though my levels are fine as I don’t need anything ekse to make me sleepy! :wink:

Anyway, thought I’d comment and bump this post, it’s only more recently I’ve come to understand how much this deficiency can impact people - I make sure my step-daughter takes it too as she’s prone to getting fatigued…

Sonia x

14

It’s nice to know that some GPs are on to it as soon as neuro problems emerge.

A couple of things though. Once you start supplementing the b12 serum test is worthless. It only takes a minute amount over a period of something like 10 days to raise serum b12 levels into the normal range. At that point doctors should start medicating with b12 according to symptoms.

Unfortunately because of a bit of a misunderstanding my postings are all over the place at the minute, but the other thread I put contains a lot of answers to myths about b12.

Firstly: Haematological indicators (ie macrocytosis) is only a possible ‘Symptom’ of b12 deficiency. The other symptoms are the neurological ones. The bloods in respect of anaemia are not a diagnosis.

Secondly: Any haematological indicators, including the serum b12, are put right very, very easily. Once this is right then the patient should receive medication at the correct dosage until symptoms stop improving. Again, relative to many other illnesses, if b12 deficiency is the root cause of the neuro problems, they will start to improve very, very quickly. Again, the serum b12 is not the definitive diagnosis. Any reliance on the serum b12 level regarding ascertaining a patient’s condition or recovery would be totally misleading.

The correct dosage for someone with neuro symptoms is every other day until symptoms stop improving. That doesn’t mean they should stop or be extended to 3 monthly simply because your serum b12 is back into the normal range.

What the treatment pioneers discovered was that bloods were reverted to normal very, very quickly and neuro damage repair varied with each patient - as did the dosage and frequency of the treatment.

The good news is, that although recovery depends on duration and severity of the undiagnosed illness, patients who do suffer from it, usually get some kind of improvement in a short space of time if they are getting the correct dosage!

15

When I first saw a neuro, and got a Dx of TIM, he wanted me to have a very extensive set of blood tests done.
These included the test for B12 deficiency.
He also wanted me to have a series of B12 injections “just in case”

My GP adjusted the time between each shot to fit round a trip to Prague for a NATO conference.

The test came back OK, but the shots were the most painful I have ever had.

Geoff

16

I think it might be better if people actually watched either the film or the other posting I made regarding the diagnosis and symptoms of b12 deficiency, because people are commenting as if b12 deficiency can be diagnosed simply by the serum b12. It is a very inaccurate test. Also, as in the comments Nindancer made, it’s quite clear that people still aren’t grasping the fact that the symptoms of b12 deficiency - as in falling, losing vision etc, are exactly the same as those used to diagnose MS.

So, if you take a small amount of b12 either by injection or by supplementation, your serum levels in the blood go up. It means nothing. It does not mean your b12 deficiency is treated at cellular level. I’ll try and find that original posting that went up and copy and paste it into here.

With the shots being painful - dunno. I don’t know what type of cobalamin you were given, how it was given or if it was buffered.

I have methyl sub-cut and I don’t even notice it.

17

Hello again,

I don’t think Stuart will be miffed if I copy the earlier posting I made that got a bit mixed up with spam.

In this post I mention the documentary film on Youtube called Diagnosing and Treating Vitamin B12 Deficiency but I’m not putting the link up in case it gets pulled again.

You have to know what b12 deficiency does and its history before thinking a simple blood test or a small amount of supplementation will put it right. It has to be understood by patients that if they go to the GP because, for instance, they are having balance issues, then a b12 test is done and then they are given a dosage of b12 and then their serum level goes up - this does not mean the b12 deficiency is treated, it means they have enough serum b12 in their blood. What then happens is the patient still has the balance issues and doctors, thinking the b12 deficiency has been treated, go on to look for another cause of the balance problems. Meanwhile the b12 deficiency at cellular level is still ravaging the body.

There is a protocol somewhere on line that most countries follow and it clearly states in that “once treatment commences all haematological indicators return to normal.” This means that once supplementation/treatment has taken place the haematological indicators cannot be relied upon to establish if the treatment is working.

Here goes with the post I put up:

In the 1930s the American scientists Murphy and Minot won not only the Nobel Prize for discovering a treatment for Pernicious Anaemia (B12 deficiency) but were also honoured with the Cameron Prize from Edinburgh University.

Prior to 1926 when M&M discovered the treatment (but not WHY it worked) PA was a death sentence.

Film of their treatment and patients can still be found on the internet today.

Back then it was known as Pernicious Anaemia because they knew that one of the possible symptoms was anaemia - however, even as far back as 1900 J Riesen Russell made clear that the anaemia was only a possible symptom and a diagnosis should not be reliant on it.
Murphy and Minot proved that with their treatment the anaemia was resolved quickly and easily - in a matter of days - but that the neurological damage remained for much longer and in many cases did not resolve completely.

In 1948 the molecule contained within Murphy and Minot’s treatment was isolated and called Vitamin b12.

It was also confirmed that the anaemia did not need to be present for a diagnosis to be made.

Yet how many modern day medical professionals know this?
How many doctors know what b12 deficiency does - that it is a demyelinating illness and death is a certainty unless it is treated correctly?
How many doctors know the neurological signs of b12 deficiency?
How many doctors know the neurological signs are the same as those of MS?
How many doctors know that unless it is treated correctly (and for suspected neurological implications that is every other day injections till symptoms stop improving (BNF Guidelines)) all that will be rectified is blood levels and the neurological damage will continue to ravage the body?
How many doctors and scientists overlook b12 because of what they don’t know and continue to try and find a cause of suspected MS or dementia or some other neurological illness of unknown cause?

Here is a link to a documentary posted on Youtube earlier this year. One of the patients is a GP who is shown in his nappy complete with feeding tube - he had b12 deficiency and never even suspected it himself.

18

It’s worth pointing out that it is actually easy to differentiate between a b12 deficiency and ms simply by a lumbar puncture. A vitamin b12 deficiency doesn’t cause oglioclonal bands in csf but ms does.

19

Is it? Does it?

Could you point me in the direction of the research papers on it, please? It all helps. - and of course, what did you think to the film, Sunshine?

It may also be worth asking the question - how many people with suspected neurological symptoms get b12 injections according to BNF guidelines - that’s one every other day until symptoms stop improving (if they do indeed start to improve)

I only know of two people in the whole of the UK with b12 deficiency that get them via the NHS.

20

Hi there and thanks to Karen for putting this post up.

Something I noticed in my blood test was an increase in mcv (mean corpuscular volume) over a period over two years. In that time it went from 92.9 to 102 (in April). The top figure is not dramatic and the doctor didn’t even notice it I think. However, I’d understood that high mcv can be a sign of pernicious anaemia, so I began taking B12 supplements in January of this year (over the counter version). Plus I’m a vegetarian who had just given up dairy so it made sense to do so. However after a week long bout of fatigue and what I can only describe as strong pulsating/throbbing sensations in February, I went to see the doc. I eventually got him to test for B12, and of course he checked that all other aspects like liver function etc. were okay.

The B12 was well within range, but after your post I’m now wondering whether the 3 month of supplements could have skewed the figures. Also, what seemed bizarre to me was that even between the Feb test and the April blood test, the mcv still rose by about 2 points. Not sure whether folic acid deficiency can also mimic MS symptoms, and I haven’t been tested for deficiency. Is this worth testing ?

By the way, I am undiagnosed as yet. Sorry for gate-crashing this forum, but the thread is a very good one.

Cheers

Astro