B-12 supplements

[Helpmeup]

Hi MS Family, just wondering if anybody is using B-12 to help with nerve pain issues. I have tried Gaba and Lyrica but could not tolerate the side effects. I read this week about people with PHN from shingles using B-12 and thought it was worth a try. I ordered the sublingual B-12, 5,000 mcg, but haven't received it yet. Anybody have experience with this? As always - appreciate any input!

[Frances_B]

A 5,000mcg dose is very high - how often are you planning on taking the tablets?

[Helpmeup in reply to Frances_B]

Thanks so much for the input. I agree with you. After doing a bit more research, I think I might try the 1,000 mcg instead. It comes as a sublingual liquid.

[Frances_B in reply to Helpmeup]

Depending on how often you intend to take the tablets that is a more appropriate dose - but you didn't say how often you plan on taking B12 tablets - at any dose. While B12 is a water soluble vitamin and mostly the excess should just end up being peed down the toilet, that doesn't mean anyone should just take large doses (of any supplements) without a good reason that has proper evidence to back it up (and reading something online about people with a totally different disease with totally different causes who apparently get relief from a supplement isn't proper evidence - especially as neuropathic pain in shingles is considered to be peripheral whereas in MS it is centrally caused).

[Cwright170994]

I was prescribed folic acid because it was found I was b12 deficient. I now take 1x 5mg tablet in the morning, and I'm feeling better 😊 I don't have pain as a symptom, and they only found it because my new neurologist had me do some bloods on my 1st appointment with him! They obviously found I was vit D deficient too, so I was also started on high strength vit D capsules, and I take only 1 dose a week. I'm feeling better, even though I've entered the crap gap before my "next" ocrevus infusion (I'm moving onto kesimpta now)! Speak to your neuro about this ❤️🫂

[Frances_B in reply to Cwright170994]

I really really really hope that your B12 deficiency was treated with B12 supplements and you weren't just given folic acid (folate) only. Folate supplementation by itself if there is also a B12 deficiency (the two often go together) can actually mask the symptoms of a B12 deficiency and allow irreversible neurological damage to occur - and while no-one wants that to happen, a PwMS who already has neurological damage from their MS would want it even less!

[Cwright170994 in reply to Frances_B]

I have looked the medication up online, and it's used to replenish vitB12. Pregnant people take this to help their foetuses develop their neural tube. So, folic acid = vit b12 bnf.nice.org.uk/drugs/folic...

[Frances_B in reply to Cwright170994]

Re " folic acid = vit b12" - that is not correct. Folate and B12 are both in the "B group" of vitamins but they are not the same thing - see the list of B Group vitamins on this webpage.

nhs.uk/conditions/vitamins-...

Folate is actually Vit B9 and that is the vitamin which is taken to try and prevent neural tube defects developing in utero. It's also recommended that, if possible, women ensure they are not folate deficient before they start trying to get pregnant. Because low folate levels can affect development from very early on in a pregnancy it's one of the reasons why so many commercially produced commonly eaten foods like bread and breakfast cereals have folate added in the manufacturing process.

Also, the link you have provided goes to a website which is inaccessible to anyone outside the UK. So, I'm guessing that maybe you have been told to take a supplement which contains both folate and B12 - which makes a certain amount of sense, given that anaemias related to/ caused by deficiencies in either vitamin often occur at the same time - usually due to dietary deficiencies, unless someone has pernicious anaemia, which is caused by someone lacking the intrinsic factor which enables absorption of B12.

[Cwright170994 in reply to Frances_B]

Ah, apologies for not knowing the link I provided wasn't accessible outside the UK. Its the British Nursing Formulary, hence "BNF" in the first part of the link. I tend to go there for all information regarding my medication. Used to be a student nurse, and the BNF is like a bible for nurses 😅

[Frances_B in reply to Cwright170994]

Here's the link I couldn't find yesterday - see under the heading "Treating folate deficiency anaemia".

nhsinform.scot/illnesses-an...

"Before you start taking folic acid, your GP will check your vitamin B12 levels to make sure they're normal. This is because folic acid treatment can sometimes improve your symptoms so much that it masks an underlying vitamin B12 deficiency. If a vitamin B12 deficiency isn't detected and treated, it could affect your nervous system."

[Helpmeup in reply to Cwright170994]

Thank you for sharing. I have been taking vit.D for years and just had my levels tested. I was pleased that my D levels are good now. Best of luck with the Kesimpta!

[Cwright170994 in reply to Helpmeup]

Thank you 😊 I'm going to get ALL my winter vax's TODAY, rather than at the end of the month with my GP. Like sure, I'm having to pay £70 for the pneumonia one, but I'm having to get it from a pharmacist in a chain health and beauty store and I don't really care 😜 one way to beat the NHS waiting times 🤣

[goatgal]

I'm uncertain of the benefit, but here's my experience. When I was diagnosed with MS, blood work showed that I was seriously deficient in B12. The heuro prescribed daily B12 injections for one week, then weekly for a month, then monthly indefinitely. Three years in, I changed from injections to oral. After half a dozen years, my current doctor did a routine blood panel and told me my B12 levels were too high and to stop taking it. Since then, perhaps just coincidentally, my gait has seriously worsened, leg spasms have resumed, and the pain beneath my metatarsals is at times simply debilitating. Were my pain issues less because of B12, I don't know.

[Helpmeup in reply to goatgal]

Thanks for sharing. Much appreciated.

[Frances_B]

While this post is not asking about causes of B12 deficiency, anyone who has had a low or deficient B12 level diagnosed needs to look really seriously at their diet. The only non-dietary cause of B12 deficiency is pernicious anaemia, and that is due to the lack of a specific chemical in a person's gut which makes them unable to absorb B12 from their food. There has been a significant increase in B12 deficiencies worldwide in first world countries (despite their plentiful food resources) because people are adopting vegetarian or vegan diets without enough knowledge about what they need to do to compensate for removing entire food groups from their diet as apart from natto ( a slimy oriental concoction of fermented soya beans), the only dietary sources of B12 are animal products.

[Greentime]

I have been taking 1000mcg of B12 daily for a number of years. Apparently it is not uncommon for seniors to be low in B12 due to less uptake. That amount has kept me at the right blood level. I can't say if it has helped with MS issues. I think it might have helped with cognitive issues, but who knows for sure!

[Helpmeup in reply to Greentime]

Thanks so much for sharing!

[lbenmaor]

I take a B-12 Vitamin twice a day.

Leslie

[Helpmeup in reply to lbenmaor]

Thanks for sharing!