I am a little disappointed you can’t give me any more information than that, as i am very interested. 
Hope your ok though.
Sorry Stewart, I posted before I realised your post had gone up.
I’m sorry that you feel that way about a subject that seems to interest your members.
I’m sorry I can’t give more information on my case but it’s because of a legal matter that is currently on-going.
If b12 deficiency is going to be a mute point and not allowed to be discussed further - then maybe, as has been mentioned to me before, separate forums are opened where members can discuss freely and without restriction (Obviously not by yourselves!)
lt is obvious that we are interested in this subject - as we were sometime ago when Karen posted. To discontinue a thread that will possibly make a big difference to somebody’s condition is wrong. Vitamin B12 deficiency is something l have found intriguing since seeing the BBC programme about Dr Chandy. He is a GP - who was treating his patients with B12 - many had symptoms very much like MS - he was told to stop - but continued as he knew he would be failing his patients care. After that l did some more research and found the books ‘Could it be B12’ a eperdemic of misdiagnosis. So as soon as l saw Karens post l felt at last someone who knows first-hand. And someone who can advise us. l have never trusted GP/Neuros - in 31yrs of MS - l have heard a lot of twaddle. Mainly because GP’s have to stick to outdated - outmoded restrictions.- which are detrimental to our well-being.
The difference between God and a Doctor
God does not think he is a Doctor.
Stewart - Could we have a seperate forum for B12 and D3.
Nice idea, Spacejacket.
You know Stewart, I’m not sat here making multiple postings to myself (although I’d make less if you had an edit function) I’m responding to what people are asking. if I didn’t respond I’d be ignorant.
Karen, you are of course entitled to your own opinion about the medical profession and researchers. At the MS Society we take an evidence based approach and want to provide people affected by MS with the best possible evidence-based information.
When making decisions about what treatments to take there are lots of things to consider such as the financial costs, the health risks and the potential disappointment if the treatment doesn’t help. These are things we would encourage people to discuss with a health care professional before trying new treatments.
We have a new booklet called ‘I’ve got nothing to lose by trying it’ that might be an interesting read for many people.
http://www.mssociety.org.uk/ms-resources/ive-got-nothing-lose-trying-it
What treatments or therapies one choses to take is very much an individual decision. Of course, your personal experience and B12 deficiency symptoms are valid and you are welcome to share this on our forums.
We would like to provide a balanced view of this issue. So I have spoken to our research team about the role of B12 in MS. And this is what they told me…
People who have pernicious anaemia can’t absorb enough vitamin B12 from food due to a lack of a protein made in the stomach. This leads to vitamin B12 deficiency.
One of the most notable studies to date includes research conducted by a group in Nottingham that looked at the occurrence of a number of conditions in 658 people with MS compared with the general population.
They found that the people with MS were more likely to have pernicious anaemia and vitamin B12 deficiency than the general population.
The link is not definitive and further research will be needed to confirm any link between pernicious anaemia and MS and to understand the relationship between the two conditions.
There also doesn’t seem to be any evidence to support the effectiveness of b12 injections (that some people may choose to take).
The clinical symptoms of b12 deficiency can be similar to MS and regarding the idea that b12 deficiency could make some symptoms worse, the evidence appears to be mixed.
Best wishes
Stewart (admin)
Thank you, Stewart.
I think maybe the point that has been missed, is not that some patients with MS may have an additional b12 deficiency but that they have been misdiagnosed with MS when in fact they have a b12 deficiency.
I have been looking up the O bands that Sunshine mentioned, but although some references are made to the study, I can’t find the study. However, what is clear is that it is very difficult - excluding the O band situation - for doctors to differentiate between b12 deficiency and MS.
I also understand what your research team are talking about in respect of intrinsic factor antibodies in respect of b12 absorption. However the major cause of b12 malabsorption is low stomach acid. This is a failing on the part of the parietal cells to release enough stomach acid. Murphy - one half of the Nobel Prize team that discovered the treatment for b12 deficiency, did much work in this region.
Very interesting to note however that recent research suggests MS patients are likely to be b12 deficient, although if you could link to the study showing the injections were not of benefit to them, I would much appreciate. Benefits are dependant on frequency and dosage - so the statement that they weren’t of benefit means little until you know what the treatment was.
Also it would be helpful, not only to me but to the members, to link to the research that suggests b12 could actually make MS patients worse? I’ve never heard of this and I’ve read an awful lot of research papers today (thanks to Sunshine!)
Hi Karen
I am going to ask a private GP to let me try the B12 theory - the blood tests wont work for me now due to 3 monthly injections and supplements.
What should I ask for
Injections every other day for 6 weeks and then weekly after that ??
or what would you recommend ?
Thanks Moyna xxx
Oooh. I don’t know now whether I can answer you or not? Or maybe I can and not use the b word.
I would think that after 6 weeks of every other day then you would know if there was going to be any improvement. After that time, you literally have to go by how you feel. I saw improvements within 2 hours. Most particularly with vision and clarity of thought.
Stuart, the whole point about my originally posting, was just to highlight the problems associated with ‘the b word’ (Ha, you nearly caught me out) Most doctors don’t even think it makes you very ill. Many doctors think it is a placebo. Plus the standard treatment for it in the UK is amongst the worst in the developed world. These facts are why I linked to the film (which didn’t go up) because they actually show a doctor with the illness, who didn’t even recognise it in himself. And he was diagnosed (Originally) with a neurological illness of unknown cause.
If the medical professionals of today, don’t know what it does, how can they (at the point of contact) be excluding it?
Well Karen,
If you cannot find the study that referred to B12 and Oligoclonal Bands, try this
Now that took me about 2 minutes to find.
There is one point that seems to have been missed in this discussion - the presence of Oligoclonal Bands in CSF is a very strong indicator of MS. Their absence does not prove that MS is not present.
Thus, the lack of OBs in the CSF does not - of itself - prove anything.
If you actually read Stuart’s post about the large sample in Nottingham the only thing that you can take from what is actually a correlation, is that there is a link between MS on the one hand, and B12 deficiency and pernicious anemia on the other (strictly speaking that is a multiple correlation) and you should know that correlations do not have any directionality - so you do not actually know what causes what. If, that is, either causes the other.
With respect to mis-diagnosis, OK, you have made your point, but don’t you think that maybe you should find another forum to promote your opinions?
Geoff
This discussion as opened a new light to me as an undiagnosed person. The MRI lesions in B12 defieciency I read tonight are on the lateral and post lateral columm. I then went and checked my MRI report and that is were mine are. In respect to Lumbar punctures go the Porf G said on the Barts site the people with MS and clear LPs do not have true MS.
Moyna xxx
l think Karen has found the right forum - if it only helps one person - its a winner.
Hi Karen2,
I don’t know of a single medical professional that wouldn’t know about Pernicious Anaemia and its demyelinating effects. AND the fact that it is an absorption problem due to a loss of the intrinsic factor. Pernicious anaemia is a well recognised auto-immune disease.
And Drs routinely test accordingly for it when a possible MS diagnosis is in the offing. Indeed here in Australia at least, it is the very first test done in the ‘rule out everything else’ stage. And it isn’t just a B12 serum level test. If it is found to be borderline low/normal or if nerve damage is evident on examination further tests are run to test the other parts of the blood chemistry to check for mal-absorption problems that are the cause of Pernicious Anaemia, specifically various antibodies that are present in the cases of an auto-immune disease which is what Pernicious Anaemia is.
Also B12 deficiency causes peripheral nerve damage as well as CNS damage and peripheral nerve damage is a big red flag to the diagnosis NOT being MS. Therefore someone presenting with this would be even more thoroughly screened for alternative diagnosis to MS.
Once B12 deficiency is ruled out THEN further investigations are done for a possible cause for neuro problems.
As regards to the OG bands it is important to realise a couple of things here. One is that OG bands are NOT diagnostic of MS. Many people can be Dx without them and further the presence of OG bands is not the issue, it is the presence in the CSF but NOT in the serum that makes it more of an indicator of MS. However in some cases of Pernicious Anaemia OG bands are found in both the serum AND CSF which again would be a red flag for it NOT being MS.
I don’t dispute that people may well have both conditions. Auto-immune conditions do tend to cluster together and if you have one you are more pre-disposed to having another one. And yes, people and their Drs do need to be aware of the possibility of having both diseases concurrently.
But to be claiming that most Drs are missing or are ignorant of this first step in diagnosing MS is taking it a bit too far. Especially when you then imply that loads of people are misdiagnosed as a result creating unnecessary fear and concern amongst people with MS. Not to mention the unnecessary cost people may now be tempted to incur as they rush off to self-medicate for something that may well not be necessary.
And this is for all the other people taking part in this thread……
By all means ask your GP’s for a routine test for Pernicious Anaemia rather than just B12 Deficiency but tbh don’t be surprised if the request is met with scepticism because unless you are presenting with symptoms of the disease it is unlikely you will be treated for it! Believe it or not even your average GP will be well versed in the diagnosis and treatment of Pernicious Anaemia.
Cheers,
B
Let’s back this up a bit.
Firstly: Brog - you don’t know of a single medical person who doesn’t know about PA?
Well, if you are talking about classic autoimmune pernicious anaemia then yep, some, but certainly not many, can give you a text book talk about what it does in respect of subacute degeneration of the spinal cord but they don’t consider it unless the patient tests positive for IFA and has anaemia.
But we aren’t talking about classic PA. We aren’t segregating it to that level. We are talking about b12 deficiency.
Now I have much correspondence from many named medical professionals who clearly don’t know what it does to the human body. There are many doctors like this and that’s why they have produced the video on Youtube, that Stewart didn’t put up.
Have you watched it?
Secondly, as I have repeatedly stated, the seurm b12 test does not rule out b12 deficiency. Again you might like to watch the video.
Thirdly, if it is standard practice to rule out b12 deficiency when diagnosing MS, why aren’t many of the MS sufferers having the test done until after they have a diagnosis of MS? I don’t know about your members, but I do know that there is a Scottish Member of Parliament whose wife has had a diagnosis of MS for years and only just had a test for b12 deficiency, which was confirmed, and then given jabs only once every 3 months.
This is not confidential information. The member just pulled out of talks on improving the diagnosis and treatment for b12 deficiency due to conflict of interest. So, not only did his wife never have a test, but when she had it and it confirmed b12 deficiency she was given inadequate medication.
I also saw only yesterday on another MS forum, a member who had been diagnosed with MS for years and then told it wasn’t MS it was a b12 deficiency.
You see, your para on ruling out PA sounds very good, but it’s not actually very specific and it doesn’t mention the lack of sensitivity of intrinsic factor antibody tests ie that they are only 40%.and again, you are only looking at 2 tests. Both of which are extremely unreliable.
How many MS sufferers get the VEGF test to rule out a cause of b12 defiency? I doubt many, since b12 deficient people don’t get it.
When it comes to peripheral nerve damage - how many of your members have had that ruled out? Come to think of it, how many b12 sufferers have deep sensory tests that prove damage done.
The problem, yet again, is that you think you know about b12 deficiency, yet you don’t. And you don’t do comparitives until you get your facts straight. And you can’t get your facts straight until you examine the evidence - and you won’t do that.
When it comes to O bands, we seem to be getting quite a confliction of information. MS patients definitely have it, B12 don’t, B12 do - I don’t know, how many people with MS have a lumbar puncture? Is it standard practice? Is it standard practice for b12 sufferers - I don’t know anyone that’s had one. I don’t know what the base lines are for selection.
When it comes to implying that most doctors don’t know about PA - you’re not right - I’m not implying it, I’m stating it clearly. Most doctors think PA is rare, they do not think B12 deficiency causes serious symptoms, they do not know what the distinguishing factors are of b12 deficiency and if they do pick up on it they will run the tests you mention, which are wholey unreliable and they will stop associating any symptoms with b12 deficiency as soon as the serum b12 is into normal.
I appreciate you have some knowledge about MS - but you certainly don’t know about b12. I say this with respect in the hope that you will educate yourself in the subject and stop passing on inaccurate information with such authority.
I’m not trying to prove that one illness causes the other. I’m trying to point out that because doctors don’t know about b12 - and I’m including neurologists, haematologists, scientists, GPs, cognitive therapists (I have got an email from one pointing out to me that I’m right - and he altered his website accordingly) MS misdiagnosis can be made. It is a possibilty - and your members need to be aware of that fact.
And if it comes to me posting in the wrong place - I’m only touching a few people - why don’t you go to the Youtube video and post your comments regarding the same so it touches many thousands. Because that video is clearly pointing out the problems not only with MS but also autism, dementia and other neuro illnesses, and discussing the problem of folate supplementation and how it can mask problems.
The ‘go discuss it elsewhere’ theory can work both ways and be productive in both ways because we have a huge problem with misdiagnosis and misunderstanding when it comes to neurological conditions of unknown cause.
The doctor in the video who became the patient had tests to prove he had Olivo Ponto Cerebella atrophy and he was going to die. Later tests proved he actually had b12 defiency. If the medical professionals at the highest level can get it that wrong and not even consider b12 deficiency until a patient is close to death, where else is it going wrong?
And if MS patients are going to ask for tests for b12 deficiency, maybe they should verse themselves in the symptoms of it before they go and when they get there ask their GP what the symptoms of b12 deficiency are. Most will say ‘a sore tongue and fatigue’ because that’s what the medical training videos state in medical schools these days.
1 Like
Dr Geoff,
Thank you for the link. I had actually seen that, but that is a paper which is a cumulative of other research papers - you get a lot like this in all aspects of medicine.
What I was looking for was the original research paper that the link you provided draws its evidence from.
Without that, we can’t see what baselines were used to establish the study groups - and if there were any errors in that. It does mention in there that b12 levels are checked but if it is via the serum b12 we now know this to be extremely inaccurate. Some research studies now, particularly those from Japan, actually put in a mitigating clause that they used this to define groups.
Hi karen im seeing my gp today. Im definitely going to ask him him about checking my b12 levels. What test do I ask for ? Have always seemed to be border line hence never get b12 treatment. One of my earliest symptoms still get now is sore tounge amongst plenty others. Just wonder if im asking the right things . Thanks sparkly.
Hi Sparkly,
If you mention b12 the only test they usually offer you is the serum b12.
Maybe it would be enlightening if I try and differentiate the differences between b12 deficiency and pernicious anaemia because I was awfully confused about it for a long time when I first got the diagnosis (then again, I couldn’t spell my own name by that point)
Pernicious Anaemia is when you have a b12 deficiency but the cause is established by having intrinsic factor antibodies. However, as I mentioned in the post to Brog, this test lacks sensitivity - in that it is only 40% accurate.
Most medical professionals also like to see anaemia in blood results as well as intrinsic factor antibodies before they confirm a diagnosis.
Since the test for b12 deficiency is not particularly reliable and neither is the IFA test and we now know that most patients with b12 deficiency don’t show anaemia in bloods - you can see why Blog says your GP will be skeptical.
So, if your test results come back and you ‘only’ have a b12 deficiency, this is rarely seen as serious. If it is borderline normally your symptoms will not be attributed to it, because doctors don’t understand the limitations of the test.
What I can say is, don’t supplement before you go and don’t eat a lot of meat or shellfish - because both of those can push serum b12 levels up and give you a false negative reading.
I know that I have had the basic tests but when my symptoms first started I took B vitamins - so these tests must be invalid. I think my only way of knowing is to start the aggressive treatment. My neuro said neurological symptoms with B12 issues are so rare he had never come across them. I felt like saying that surely radiation damage 23 years later is rare. That is my “suspected” diagnosis at the moment. MS is still off the picture due to negative LP and negativer brain MRI.
Moyna xxx
Thanks karen I think I understand it a little better now. Not taking things in as easily as I used to my concentration very poor. I definitely have ms but ive always suspected a possible b12 deficiency along with diagnosed anemia. Thanks for all the information you’ve posted about b12 will speak seriously with gp. Sparkly
Sparkly, if you are concerned tht you do have a B12 deficiency that isn’t being picked up by standard serum testing you may need to ask your GP to do test your serum homocysteine and methylmalonic acid levels. These are very specific tests for B12 deficiency and will pick it up even if the levels are being masked by folate levels or dietary intake of B12.
Karen2 is correct in what she is saying that B12 deficiency CAN be under diagnosed but that more refers to the general population, especially the aged and vegans. The reality is that in the diagnostic process of MS we are subjected to a battery of blood tests designed specifically to rule out exactly this issue. Also it is fairly rare among the general population to suffer severe CNS damage from Vit B12 deficiency because most people are diagnosed with it and treated before it gets that severe. I am sorry that you were misdiagnosed, Karen but to then extrapolate from that that most of us are also possibly misdiagnosed is as I said before, taking it a bit too far.
B
There are quite a few of us that have been misdiagnosed - or left in limboland because test results have not been conclusive.
lts years since l was diagnosed - MRI/LP - 31yrs - never had a MRI since for my MS. As far as l know l was not tested for B12 deficiency. Not that - it turns out - would have been very helpful.
Did ask GP - a few years ago - about B12 injections and was told that l did not need them - it was only for people on DMD’s.
So l self-medicate - and l am sure that l do have more energy.
l spoke to someone who is a nurse/carer in a ‘home for the elderly’. [This lady did the Great North Run and raised money for MS]
She said that the residents were given B12 and also D3. Because B12 helps against Dementia - and the D3 helps with protecting them from fractures if they fall. She said she and her OH take the supplements themselves. We were talking about how the stomach acid meds actually deplete B12.- which so many people take.
Karen,
Your post has yet again become of great interest to us. And l am doing my best to understand it all. You have suffered personally because of the lack of knowledge of B12 - and l can see your reasoning - trying to ‘spread the word’ to help others who could well be in the same position. And as the video shows -without exaggerating - this could be ‘life or death’ to someone.