Forum

MS & B12 is there a link???

Hello Everyone, hope all is well.

I went for a blood test on Monday and received a call today from my doctor to say i need to have b12 injections.

does anyone know if there is a link with MS and B12 deficiency?!?!

Dee

Hello Dee,

B12 deficiency can cause similar symptoms to MS, BUT is more common in people with MS, too. So yes, there probably is a link of some sort, but it’s not absolutely clear whether B12 deficiency is a contributor to MS, or a result of it!

We might simply be using up more B12, to try to repair damaged myelin, which could explain the shortage.

Tina

I must say that through out my years of being a vegie I always made sure I had plenty of B12. As I know it is something us girls in particular need.

I do wish I’d carried on eating fish though, come to that I wish I’d eaten oily fish when I was younger! ‘I was only a fishmonger’s daughter and certainly knew my plaice.’ Dad didn’t bring a lot of oily fish home as he was sick of it (can’t blame him really).

Wendy

x

Dee,

Your GP is doing the right thing - lt seems most of us with ms are B12 deficient. And our levels should be much higher then the

NHS have previously been going by. Some years ago l read about a Dr. Chandy [you can google him] - and l saw a programme on BBC

about his work with vitamin B12 deficiency. Many of the symptoms of B12 deficiency mimic MS - scary thought. You can also google

‘Could it Be B12’ - l have the book - and l have lent it to my GP. Once you have started your ‘shots’ you should soon notice a difference

in your fatigue and memory.

B12 is very important also for elderly people as a deficiency can be mistaken for dementia. l have a friend who works as a carer in a residential home for the elderly - and she was telling me that they are supplementing them with B12 - and Vit D3. The D3 is helping prevent broken hips/ osteo-porosis.

F.

I have had MS for 21 years but only experienced recurrant optic neuritis over six years. I then went into remission for many years. I recently relapsed with sensation and strength problems in my legs. My hospital also took my blood to test for B12 deficiency. I can’t imagine it will take long to see the results but I’m not going to wait – I’m going out to buy B12 supplements tomorrow! Sorry, that isn’t madly helpful, but I felt like sharing.

Hello All,

Thank you all for taking the time to read… I had my first b12 injection on Thursday 8th Dec (didn’t even feel it) and second today… i have one more booked for Friday and need to book a further 2 more in the next 3 weeks.

I was talking to a friend and she said ill be bouncing off the walls with energy!!! lol… look forward to that!! (thought id share my diary with you all)

I use the auto injection for interferon injections every other day and it is quite painful… if i injected manual would it be less painful?? because i didn’t even feel the b12!!

Thanks again guys…

Dee…xx

Funny enough - I get B12 injections, every three months and i was advised by a fellow MSer to get it more often no matter what the GP says…

Got to say B12 injections every 3 months just do not cut it for most especially for those with higher needs…eg MS,ers.

I get mine privatly now and inject when I need , sometimes daily, sometimes weekly…you get to know the feeling when you need a shot.

Many doctors totally and absolutely refuse to increase from 12 weeks between shots…NHS PROTOCOL !

MONEY !!!

Ell

ps I also think my dx was confused by my B12 deficiency…yrs back.

I was also low on B12 at diagnosis and when I told them that I knew about B12 injections as my mum had pernicious anaemia (which her cardiac specialist said is what led to another heart attack), they immediately ordered B12 injections for me! I now have them every 12 weeks and did ask my neuro if he thought that was sufficient. He said that my blood tests show that I am now ‘normal’ for B12 so would not recommend increasing the frequency.

I did notice the difference when I had the first course and my fatigue was at an all time low, but now I don’t notice the difference so much so perhaps he is right.

Tracey x

my gp used to give me a B12 shot in the surgery but new rules say that gp shouldnt do them and i have to see a district nurse at a clinic in the next town.

these rules said that 3 months was the right frequency but a nurse at my gp’s surgery noticed that she had a lot of people with ms on her books and now does a 6 monthly review. i told her tht i felt better on monthly B12. so she has pulled some strings and now i have them monthly.

carole x

I’m not diagnosed at the moment but at the start of the investigations I was B12 deficient and had the 5 injections over 2 weeks. I felt no improvement in my tiredness levels tho xx

My GP said there is no point at all testing for B12 once you start on the injections as your level will always show ok.

In the USA I was tested over a period of 10 weeks ( weekly ) and it was never the same, never high but sometimes lower than normal.

When I came home I had a yr worth of injectable B12 prescribed but after that I had to either return to the US or find a Dr here.

My own GP chooses to ignore the fact I inject more often I believe as he was sent a letter from the Dr I got it from, she will not prescribe otherwise.

If I feel too unwell to inject ( sometimes happens ) it is of course usually when I need it most…but my hubby and my adult son can tell and will ask if I have missed injections.

If you read up on B12 deficiency so many symptoms overlap with MS and FM it does seem some may be misdiagnosed but I believe that it is more likely that some have a predisposition to one of the above giving a greater chance of other problems too.

These are alll auto immune diseases after all.

Ell

Hello,

I would like to say that B12 injections completely changed my life.

Has anyone else experienced remarkable improvements and even disappearance of symptoms after injecting b12?

I would love to hear from you !

Best wishes

Nina

I take 1 x B12 tablet every morning. Never been advised to (don’t believe I’ve ever been tested for B12 deficiency) but as I’m not a big meat eater thought it was best. In the morning I feel okay but come early afternoon fatigue kicks in big time. I was wondering whether to do a personal trial of taking a 2nd tablet. All comments and advice welcome.

Tippy x

Hello Tippy,

thank you for your reply.

Prior to my MS diagnosis I was taking a b12 tablet every single day. These made no difference to my symptoms whatsoever and I just kept steadily declining.

It was only onceI started taking liquid b12 (and even more so after b12 injections) that my symptoms started to rapidly recede (blurred vision, brain fog, incontinence, balance, unable to sleep, heat intolerance etc etc).

I suffer from b12 malabsorption, which is why b12 tablets did not help me at all (it turns out that, due to a relatively common genetic abnormality, I am unable to absorb this vital vitamin through my gut).

I just want to share this with all of you, in case this information helps someone. I would have given anything to know about the possibility of b12 malabsorption at the time of my diagnosis.

That is very interesting. Next time I see my doc I will ask to be tested for vit B12 deficiency.

Two questions please…

How did you find out you had a malabsorption problem

Where did you buy your liquid B12

Sorry I can’t get the question mark to work today…

Thanks

Anne

Hello Anne, I used 23andme to have my genome sequenced. You can google ‘b12 polymorphisms’ to find out more about them. The information is out there and very easy to find, once you know what you are looking for that is (vitamin b12 malabsorption). You can buy liquid b12 on Amazon, i buy the ‘yoga nutrition’ brand. I wish you and everyone all the very best with trying b12 !!!