Last reply 1 year ago
Vitamin D

Hi All
Sorry I haven’t been around lots of medical stuff going on. My Neurologist says VitD is a waste of time but I met someone in France with MS who said she found it beneficial, what would be the best daily dosage because then I can discuss it with my GP. he is very amenable to suggestions as he is not an expert but has an open mind re. alternative and complementary therapies?

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1 year ago

it’s not alternative or complimentry, & depending on where you read, lack of Vit D is the cause, & probably the chance to relieve symptoms, research is ongoing but…
personally I know how much better I am for taking it, along with Vit K & calcium

1 year ago

@cillaw , I don’t know which planet your Neuro lives on, but Vitamin D deficiency has had high exposure in the media, suggesting that supplementation may be necessary!

1 year ago

I am not an expert on Vitamin D, but I know from my own personal experience that I feel much better after taking it regularly. Maybe its just psychological, but my Inflammation increases and I get weird feelings (anxiety, brain fog )when ever I skip my vitamin D tablets.

1 year ago

My neuro test my Vit D level every year, it was really low when I was first diagnosed and took a couple of years for it to get up to a normal level. I take 4,000 mg daily to keep it at that level, I have noticed that is a pretty common dosage that people with MS take. Potter

I take Vit D3 5000IU everyday. Levels were tested add were good.

It’s just good to be topped up anyway…….just for general improved immune system.

1 year ago

I’m not sure where you are in France, but the majority of adults in the UK are deficient in Vitamin D, and supplements are recommended (as well as plenty of oily fish and sunshine). If your GP is amenable to it, they can test your blood for Vitamin D deficiency. Standard over-the-counter Vitamin D3 is 1,000 IU or 25ยตg, and I think that’s the recommended supplement. However, I was so low in Vit D3 that those supplements wouldn’t touch the deficiency until I had a booster from the GP – this was something like 5000 or 10,000 IU in a few bursts. Then I could take the standard supplements. With low Vit D levels correlating with not only MS but things like SAD, it wouldn’t hurt to take and is one of the few I do ๐Ÿ™‚

1 year ago

The Barts Blog is a reliable source of information and should answer you questions.

for a Neurologist saying that vitamin D is a waste of time is really crazy. That neurologist is going against all the conventional widsom that has currently been accumulated. I would start with any MS society’s website just to get a sense of what is currently viewed at the “baseline”.

Maybe a more complicated reasoning would have made sense if it was in conjuction with something else. However “waste of time” is one of the worst reasons I have heard. A small pill that costs almost nothing for something that has shown numerous benefits with almost no downsides? Where is the time waste in that?

1 year ago

My consultant wasn’t interested in talking about Vit D either. But, I ask my GP for a blood test every six months and try to keep it just above normal. For me that is around 4000 IU at the moment (winter). I was deficient at diagnosis.

1 year ago

My consultant gave my two pieces of advice…. take 5x the recommended dose of vit d and try to cut out salt. All my bloods were great (not got d deficiency at all). This was in October shortly after diagnosis. I haven’t had a cold or flu since, even though my husband and children have. Due to start Lemtrada this coming Monday. Wish me luck!

1 year ago

Unbelievable that he said that. ….. I wonder what else he doesn’t know about MS. In your shoes, I don’t think I could trust him with my care.

1 year ago

@cillaw It’s unbelievable, indeed, that a neuro says such a thing. Lack of D Vitamine is very common and I guess we can even say – part of this condition (MS)…. so in my opinion, you should listen to your friend and seriously talk to you doctor.

I know I am not an example, as I refuse all the heavy medicine with side effects that I think are worse than the MS itself. But I have an appointment in a clinic specialized at “The Vitamine D Protocol”, and it will be my choice. I still don’t know the doses, ’cause the doctor is completely booked and busy until May, so I can’t tell. ๐Ÿ™‚

Good luck with your research cillaw and all the best, whatever your decision ends up to be!
Take care xx

1 year ago


Go for the GP as the neuro opinion sounds weird. My neuro tested me, put me on a high dose of Fultium-D 3500IU for six months and then dropped me down to 800 I U for ever! I am not so tired any more, and I also take ginger root capsules from the health shop in the vain and probably misguided hope that it will reduce any inflammation of the nerves and myelin
Good luck x

1 year ago

Ask to have your blood levels of vitamin D tested – whether he thinks it’s connected or not, if you have low vitamin D (you have MS – you have low vitamin D) you should get vitamin D supplements.

Also – the links other people already posted ๐Ÿ™‚ – there’s a connection, or maybe a correlation, no-one knows but a LOT of people feel better after supplementing their vit D levels for a bit.

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