Link between Vitamin B12 Deficiency and MS

[BettysMom]

A recent study, conducted by researchers from Sanford Burnham Prebys, in collaboration with others, and published in the December 2023 issue of Cell Reports, sheds more light on the subject, revealing a molecular link between vitamin B12 deficiency and multiple sclerosis. The researchers suggest the possibility of new ways to treat MS via specific brain-targeting B12 formulations.

theepochtimes.com/health/vi...

[goatgal]

Thank you. When I was first diagnosed with MS, bloodwork showed that I was deficient in B12. I was prescribed daily injections for a week, then weekly for a month, then monthly for (what I was told) for the rest of my life. Three years later, the next doctor said this was no longer necessary and since then all bloodwork shows acceptable levels. I have no idea why this variation would occur as my diet has not changed.

[bookish in reply to goatgal]

Hi, usually when you are prescribed B12 injections for life it is due to either Pernicious Anaemia (the autoimmune form of B12 deficiency) or some other malabsorption state (anything affecting parietal cell/intrinsic factor production) rather than a dietary deficiency. As MS is I believe autoimmune, it is quite possible that you have PA alongside. If this is the case you should be getting injections for life and your blood level should not be being monitored as it will go up with supplementation regardless of effectiveness of treatment. B12 is complicated, but blood looking normal may not mean that all is as well as it should be. Are they only testing serum B12 and do you have the diagnosis that made them give you injections in the first place? There are other tests which could give you a better idea if you still need B12, which I suspect you do. Not medically qualified but a vast experience of B12 metabolism failure personally and in the family.

[goatgal in reply to bookish]

Thank you. I do not have the original medical records that prescribed injections. If I understand your technical terms, my B12 has always been measured with blood draws. The records are in the files of my current medical doctor whom I see in mid-March. I will explore this at that time. Your information interests me, because when I was in my 40s and tried to participate in blood drives, I was turned away after blood tests. This was decades before the MS diagnosis: upsetting at the time, but when I mentioned the denials to my doctor, he was not concerned because I hadn't yet reached menopause. He just told me to eat more meat,(though I have never been a vegetarian). So thank you for this.

[bookish in reply to goatgal]

My pleasure. I wonder if you were showing signs of anaemia in your blood drive tests. Unfortunately if we are low in iron (which tends to be ignored unless drastic in pre-menopausal women), then the signs of changes to red blood cells that would normally start to show with a B12 deficiency will be masked. The iron D would result in microcytosis (small red blood cells) and the B12D in macrocytosis (large, immature red blood cells) - and the MCV on your full blood count would therefore look normal, or normocytic, as one would obscure the other. You don't actually have to be anaemic or have large red cells to have a B12 D but a lot of doctors don't know that.

There are two types of serum test for B12 - the usual serum test and an active B12 test (or holoTC). Serum includes both active and inactive forms so will be much higher. The active test sometimes shows people who are deficient but didn't get picked up by a serum test. Ideally you want serum B12, active B12, serum folate (B9), serum gastrin, anti-gastric parietal cell antibodies, anti-intrinsic factor antibodies, homocysteine and MMA (methylmalonic acid). B6, B2, magnesium, vit D all would be useful too, plus a coeliac test, just in case .But all can be normal and you still have a B12 deficiency which will respond to treatment. Some do better with one form or another -there are 4 forms of B12 (cobalamin) and three B9s that I know of. But don't supplement before testing as you'll make it all much harder to pin down. Good luck working through it with your doctor.

[Greentime]

I have been taking B12 every day since discovering it was low. I didn’t know there was a possible connection to MS. Thanks for posting.

[bookish in reply to Greentime]

Hi, the connection has been suspected for many years and people with B12 D and PA are frequently misdiagnosed, sometimes with several things over several years - MS being one. How low were you and do you know why? If you are taking oral supplements it may not be enough. Cheers

PS a similar thread currently on the thyroid forum healthunlocked.com/thyroidu...

[Greentime]

I am guessing about 5 years., I don’t remember how low. I take 1000mcg/day. I was rechecked and levels were good. I think it is time to revisit this. Thanks!

[bookish in reply to Greentime]

Hi, I'm getting tired, I just typed a reply and lost the lot....arghh.

1000mcg is a decent chunk daily so serum level should look good, but is it helping symptoms, assuming that you can differentiate? B12 in the blood is not the same as B12 in the cells doing what it needs to be doing. If you have a dietary cause (vegan or similar) then oral should be fine, and if it was a temporary low due to a medication like a PPI or metformin or nitrous oxide that you are now off then you may be ok with dietary sources, but more likely you have some absorption issue so you would have to judge from improvements made. Testing would be skewed by the supplements. You could come off for testing but to get reasonable results could be weeks and could make you worse again. Some things start to resolve quite quickly once you supplement, like homocysteine and MMA, but if those were still raised you'd know you still have a B vitamin issue (could be B12, B9, B6, B2). With one autoimmune condition it is perfectly possible that you have parietal cell or intrinsic factor antibodies and might be building up a deficiency which would be better with injected B12 than oral (or may end up having to). You may find that a different form of B vits or a different delivery method suits you better, and you need the cofactors for them all to work together. Cheers

[Greentime]

it is an absorption issue, likely due to age. I don’t think I could differentiate anyway, I am in pretty good shape!