Vitamin B12 Deficiency or MS?

Did you not read right through to the references, and follow through on them - as anyone trained to read scientific papers would have done?

Now, I seem to recall that you had an exchange of view with rizzo last year (just after you had signed on to this forum. She posed you a number of questions:

That was easy to find as well.
But, I cannot find anywhere where you answered her.
Again, why don’t you post on some more appropriate forums - they are also easy enough to find.
Of course, you may have already been down that route … …

Geoff

Hi Geoff

As yet I have suspected dx of delayed radiation myelopathy (treatment was 23 years ago and I have only had real problems for 3 years)

I have had periods of numbness/pins and needle and had a MRI scan in 2005 all clear and was discharged without bloodtests

In 2011 I started to have walking problems

2011 MRI showed lesion on the posteria/dorsal column of the cervical cord

I have cord atrophy from C2 to C4

I have a negative LP

No brain lesions

I started supplements and quarterly B12 injections before blood tests

I asked for more aggressive B12 treatment but then blood was taken and B12 levels are fine so they continue to say that I have progressive neurological poroblems which are not ms, or myletitis or B12. Hence lets blame the radiation ! Radiation damage cannot be proved by any tests. I am so fed up.

Moyna xxx

As a diagnosed person and really effing struggling at present, I am getting right narked at negative LP can’t be MS. I was diagnosed before having an LP and it is definitely MS. My scans and clinical exam were as clear as day!! I will find out the results in December but I don’t need to know it to know what is wrong. My Neuro was absolutely clear on his diagnosis and he is known for the ‘probable’ or ‘possible’ MS. I don’t wish to be argumentative but it isn’t helpful for newly diagnosed or limbolanders to read such things. I am interested in the reports on this but my diagnosis stands. I am not alone on this. I have been tested for so many things including B12 and I thought this was a standard test whilst being screened for MS. Any information is helpful and welcome but I read with open mind and know that with some evidence within these reports it doesn’t fit with me. It would turn my stomach to think that some would have me and others on here question our diagnosis, treatment and the such because of one of many alternative diagnosis that Neuro’s and GPs are fully aware of. There is no get out for me so please give over trying to convince me otherwise. Sam :frowning:

Whether diagnosed or not - it is well known that ms sufferers do have a problem with B12 [and D3] deficiency . What this thread is showing us is that the usual blood test for B12 deficiency is badly flawed. lt has been my experience with GP’s/Neuros - that they do not understand the significance.

l am now going to start using the B12 patches. They use transdermal technology to deliver the natural active ingredients into the bloodstream through the skin. As much as 95% absorbed directly into the bloodstream. This is the nearest l can get to injections.

The patch stays on for 24hrs and you apply the next one in a weeks time. l have been taking B12 in capsule form and the crystals that you make into a drink. But so much of this is lost via the digestive system.

When l sign up for Zumba Classes - l will tell you.

This illness has already effected 31yrs of my life. So l will try all and anything to see if it helps. What have l got to lose?

l appreciate the help that Karen is offering as l do not have any confidence in our so called experts - whose only answer is to leave me to get on with it.

Let us take a different view on this.

Searching for the words that Karen2 suggested: “Diagnosing and Treating Vitamin b12 Deficiency.” I found that the video had been uploaded to UTube not once but twice. In January and again in May.
The video runs for nearly an hour and is very professionally produced.
The comments after the Jan posting are very interesting - a lot of them use the same words as Karen2.

Why do I get the feeling that this is all part of a planned campaign?

Incidentally, If one does a search as above and goes on to the second page of results, this paper can be found:
http://www.direct-ms.org/pdf/NutritionMS/B12%20and%20MS.pdf
which makes an interesting read in the light of both this thread, and the postings by Karen2 and rizzo last year that I mentioned:
http://www.mssociety.org.uk/forum/everyday-living/vitamin-b12-anyone-else-xx?page=2
the link will take you to page 3, but start at Page 1 and then compare with this week’s thread.

Geoff

It seems a very heated thread, and I’m confused! The way I understand it in my very simplistic way is, people with ms can very often have B12 deficiency too. Not calling into question their diagnoses. But there are some like myself not diagonised that has come to love this informative forum to give advice and direction. I don’t believe I have ms I have neurological problems that are having severe impact on my life but mri clear, therefore discharged. Probs continued to progress, doc sends me back to neuro which means another 20+ weeks before seen by neuro who will say not ms go away! In the mean time I have a ferritin reading of 4, low B12 of 248 but not low enough progressive neurological deteriation, so this thread makes me think it could be this, gp won’t do a b12 and ferritin test as it is a waste of resources as my problems are neurological!!! All we want is reasonableness and balance from gp and the forum Jo

Jo it must be awful to be in the situation you’re in, at least I know I have MS for better or worse.

The trouble with public forums is that anyone can post anything and there have been instances of some very bizarre theories posted on this forum and exmples where peole have clearly posted to further their own interests.

Geoff is indeed providing balance to this debate by challenging the original poster. TBH I’ve not read the OP’s posts beyond the original one as they are too lengthy and evangelical for me.

My sympathies are with you, maybe it is time for you to change GPs or get a second opinion or both.

Thanks annieB I don’t think I quiet got what some were saying as I’m very fatigued, brain not taking all in. But I appreciate your comments. This forum is the only thing that keeps me determined not to give up with the medical process. There are a lot of caring people on this site Jo x

I just wanted to point out that this thread has been real eye-opener to me. When I asked my doctor whether vitamin deficiencies could be having an effect on me, he said that there weren’t any vit deficiencies that could do this. As I mentioned before, I am undiagnosed.

The paper that you put up in a later post which talked about potential connections between B12 and MS was also of interest. All of this information is making me feel more informed and able to negotiate my way through doctors and choices about vit supplements I wish to take or not.

I am confused then as to why there is this attempt to gag people and not allow them to put their points across. Surely the whole idea of a forum is to allow people to exchange ideas openly. I haven’t been back to the doctor (GP) since May, when he told me that he was stopping tests. Newly armed with more information, I now feel more able to go back there and demand either treatment or referral to a neuro.

I cant understand how anyone would benefit only themselves by starting threads on this theory. So if they are doing it then it must be to inform others. I do feel the need to question the medical profression big time. I have been diagnosed with probable delayed radiation myelopathy which my cancer specialist say is impossible from the type of radiation therapy I received. Yet the neurologist disagrees. Vitamin B12 tests were never done before I started taking supplements and quarterly B12 injections. Doctors say the supplements make no difference to the tests yet the B12 book clearly say they do. I have a problem which has been seen on scans yet am not on any treatment plan and am deteriorating. I feel the need to take charge of my own health and do what ever I can. It is either that or give up.

Moyna xxx

Hello there! I am new to this forum and I thought I’d post something that is a bit of a mystery and may be of interest reading or trying to work out what this is that has manifested in me! It’s a bit of a long read but I will try and keep it to the point as much as possible! Ok so I am currently 24 years old female, this first occured when I was 21 years old. When I was 21, I lived in a small town called Whitehaven with poor medical facilities. Throughout my teens I was quite a binge drinker. I was drinking when I was 21 too, not everyday but when I did drink it was a large amount (also smoking too and abit overweight). Anyhow, one day I woke up to long distance blurred vision. This made me go the hospital, I noticed straight away the opthalmologist I had was pretty terrible and he misdiagnosed me several times. He called for a brain MRI scan. Which concluded white matter hyperintensity in the periventricular, juxcortial, subcortical and possible small one in cerebellar region. Sorry for the terrible spelling! Anyway, he said “you have ms, don’t take hot showers, goodbye!” Which by anyone’s imagination is terrible for him to say with no further evidence. Anyway, I stopped going the hospital due to mental trauma of the 5 misdiagnosis’s he game me, one being ms. Its also worth mentioning that I developed uveitis (an eye condition) within this time frame when I had a reaction to a face cream. It has now cleared up but left my eyes permanently sensitive. Fast forward 3 years later and I do not have any symptoms related to ms (and I have done a huge amount of research) which is leaving me very confused and starting to look at differential diagnosis. I have quit smoking, drinking and have lost a lot of weight intentionally. However unfortunately I have been left with severe anxiety due to the experience. I moved to a city where the healthcare is much better, I had a long discussion with my GP and she concluded that no further testing is necessary because I havent had any symptoms nor complaint. Plus white matter is non life threatening. She also stated that my anxiety needs treatment and the Dr in Whitehaven needs sueing. She concluded that it was either radiologically isolated syndrome or the white matter was due to me living unhealthily. However, I have started to have some suspicions on myself. Within these 3 years since the MRI debacle I have felt really good in myself, got healthier, and as I said the eye condition cleared. But about 6 months ago, I experienced a relapse in my severe anxiety (the worst yet) and it went on for a bit too long. I got so severely stressed that I was having panic attacks daily and lost my will to live. About a month in to the stress I started to experience physical symptoms that I’ve never felt before. My vision had shadow spots, I had restless leg, insomnia, heart palpitations, parasthesia, stinging nerves, muscle twitching and more. I couldn’t understand it. I decided to Google this and vitamin deficiency was the first result. I decided to take multi vitamins and within a month ALL of my symptoms dissapeared, and when I stopped taking the vitamins too soon the symptoms slowly re-emerged. I read that crippling stress can cause vitamin deficiency. This got me thinking…what if I have a difficult time taking in vitamins? What if they are disturbed by things such as binge drinking when I was younger (vitamin b12 and drinking go hand in hand) and what of it kicked off again because I felt stressed? It may be possible that I am struggling with several vitamins but one that I am very suspicious of is b12 due to the vision decreases , alcohol consumption, and nervous system disturbances like stinging nerves. What if the white spots on my MRI brainscan 3 years ago was a vitamin b12 deficiency if this is possible? What if I am a victim of yet another ms misdiagnosis? When I am not stressed, not drinking or doing anything substantial I seem to excel physically but very sensitive to change! My doctors now are not bothered to take this further because I am not reporting I am suffering with ms so they see it as insignificant. However I would love to hear all your knowledge, opinions on this case or experience. I am not suffering physically as I mentioned (when I look after myself and take vitamins) but since the experience in Whitehaven I have been left with a mental disorder. Thank you for reading and I look forward to your responses. Take care xx

Just caught a glimpse of this thread, and started to read some of the posts but they are so long winded I lost interest, however for what it’s worth my GP has said that there are two ways of testing for B12, the usual B12 test is simplistic basic test, and I’m guessing even the test carried out by my MS consultant was the basic run of the mill test.

Same goes for testing Vit D, it’s a particular test that needs to be carried out, I believe its called 25-OH vitamin D, not the basic Vit D test

So to cut it short, what is the B12 test we need to be asking for ?

I realise this is an old post, but things have moved on over the last 8 years & I would hope, so has the understanding of B12 & it’s role in MS (although I very much doubt it).

B12 plays a huge role in the support & maintenance of nerve & myelin. It is no surprise that a deficiency can seriously impact nerve function anywhere in the body - although the periphery is often the first to indicate an issue.

The biggest problem with B12 comes from a misunderstanding of how the deficiency is diagnosed. There are at least 3 ways it can be missed.

Firstly, many doctors still only test for Pernicious Anaemia. However, depending on Folate levels, which can change the blood cell structure, it is still possible to have B12 deficiency without the anaemia. In which case the B12 deficiency may be completely missed.

Secondly, even if the B12 is independently checked, most doctors assume that as long as B12 is ‘within range’ it is acceptable. But that runs on the assumption that everyone’s tipping point into deficiency is exactly the same, which is obviously not true. Many things can determine how much B12 an individual needs in order to not be deficient, including diet, lifestyle, what drugs they are on, how well they can absorb or utilise B12, etc, etc., and of course, ‘adequate’ is nothing like ‘optimum’.

Thirdly, in those that can absorb B12, the ability to convert it to its active forms Methyl-cobalamin & Adenosyl-cobalamin for use at cellular level may be impaired. In that case, the serum B12 may appear normal or even high (in fact high B12 may be a red flag that it isn’t being utilised very well). Having plenty of B12 floating around the bloodstream tells nothing about what is - or isn’t - going on at cellular level.

Whilst an ‘active’ B12 test may give a better picture, Homocysteine & Methylmalonic Acid (MMA) tests are also very useful, as high levels would indicate the B12 is not being utilised very well to bring them down. High B6 may also potentially suggest a poor B12 conversion. As the symptoms of B6 ‘toxicity’ are identical to those of B12 deficiency, it is possible that occult (hidden) cellular B12 deficiency is the real culprit.

Dr. (removed by moderator) who had had experience of acute B12 deficiency amongst vegan Hindus, discovered that a high percentage of his patients in his Durham practice, were B12 deficient. And amongst them were some diagnosed with MS who turned out to be very B12 deficient. Giving IV B12 was like flipping a switch for them. Although now sadly retired, he wrote a book ‘B12 deficiency in Clinical Practice’ available free for distribution to Health Professionals from his website I believe. Www.B12d.org
There’s a little video about him & some of his patients on YouTube.

It is likely that if this was picked up early, the damage may be reversible, but because the Medical Profession is so blind to the devastation & havoc that undiagnosed B12 deficiency can wreak, it is rarely, if ever even on their radar. And if it is ever detected, it is just assumed to be a ‘result’ of the MS rather than a potential cause. So sad.

All B vitamins are involved in the nervous system in various ways. Thiamine (B1) can also be implicated in ANS & CNS dysfunction. The different forms of BeriBeri are very much alive & kicking (our butts) in this modern high-calorie malnutrition lifestyle. Due to things like antibiotics devastating the gut biome, many of us no longer have the plethora of B vitamin-producing & metabolising microbes in our guts, so find it very hard to utilise B vitamins. Stomach & gut issues, surgery, PPI/antacid use, certain drugs, ageing, etc, can all inhibit B vitamin absorption &/or utilisation. I wonder how many have had various gut & digestive issues prior to their diagnoses……?

Thanks. A very useful post.

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