hi there
when i was dxd last summer it was recommended that i took vit d so mrs f.o. kindly bought me a bunch on capsules, but the MS nurses said i’d need about 4 bottles per day as i should be taking 5000iu! have been taking this amount since, and like many posters here i’ve noticed no difference, but i understand its not restorative but prevents deterioration.
although it is arguable as to whether ms is hereditary, i was also told that it would not be a bad idea for my three children to each take 2000iu per day for the same reason, although this does involve some bribery…
hope this helps answer your query, cheers fluffyollie
I got told by my MS Nurse to start taking 1000-2000iunits of vitamin D. I am now taking 2000iunits a day. Too early to say whether any benefit I was only diagnosed on 11th March. I have also started taking Omega 3,6,9 capsules. My MS doesn’t qualify for DMD so I’ll try anything natural that might help prevent further damage. I got lots of sun as a kid but burn badly, blame my Scottish genes for that, have always needed high factor sunscreen.
Snowqueen
My neurologist, who is an international expert in MS, recommended vit D supplementation at 5,000iu.
There is an undisputed link, but what it actually means is not confirmed. People with MS have lower vit D levels, but for what good it does to increase them after diagnosis is not known, if any.
Anecdotally, people report less fatigue.
The problem with these things, including DMDs, is that we do not know how we would be without taking them. So the things they do are not obvious. With proven DMDs, you can see the results from people who do take them and those who don’t, with those who do having fewer relapses. But the very fact that they haven’t had those relapses mean they do not see the result for themselves, if you get what I mean.
I was prescribed 3,200 iU’s a day to start with by my GP because my Vit D levels were very low (blood test from the first Neuro appointment). I am now on a maintenance dose of 800 iU’s a day plus 20 minutes a day exposure of forearms and face (without the sun block). Before I started on the D3 capsules I had serious brain fog - within a few weeks on 3,200 iU’s the brain fog started to ease up, whether it would have eased up without the extra D3 I don’t know, but it seemed to be the deciding factor. I’ve been on this dose for about a year now.
I take it too and have done for a couple of years. Not long ago my vit D level was checked and was about right, so I assume it might have been a bit low without the supplement. Both my MS nurse and neurologist recommend all their patients take 5000iu. I’ve never noticed a difference but as it doesn’t Impact me adversely, I’m happy to take it on the off chance it may do some good.
Sue
i read in a few places (don’t ask me where) that a balance of D3, calcium and magnesium is required for optimum benefit.
i’ll have to google the ratios though.
carole x
I take 2000iu a day and my levels are 97. One MS nurse said to me my level is great and normal levels are between 50 - 100. Another MS nurse said 5000iu a day is recommended. If I upped it to 5000iu a day it would be too much for me.
don’t know my levels, but my neurologist recommended 4000IU daily.
they said it was readily available, easily affordable, low toxicity and reasonable amounts of research indicate favourable prognoses for those with MS who take it.
my understanding is that i do not have low levels of vit D3, but my MS predisposes me to require more of it than your average human. the need for D3 supplementation is not due to something being ‘wrong’, merely ‘different’.
recent research however, states that conventional vitamin pill popping is failing to deliver into the blood stream and adequate level of the supplement.
in related news,… i also eat B12 (sublingual dissolve) due to the notion that it can aid nerve repair / remyelination.
I take B12 too Paolo, for the same reason. I’ve been reading up on biotin too. It’s in early stage trials for people with PPMS and SPMS, which is showing promising signs of reduction in symptoms, but it’s at extremely high doses.
Biotin is vitamin B7.
I also take a cod liver supplement and milk thistle. I’ve increased my fish and seafood intake, but it seems to be that it helps.
I take milk thistle because I’m on Tecfidera and I’m worried about the long term liver impact of taking it. Milk thistle is proven to help liver function.
I am happy to take supplements that I independently research and feel that it won’t do any damage to me.
I’m a big believer that MS will not stop me from doing what I want to do. I will make adequate changes to my lifestyle which may help, but I’m not a fan of changing my life to fit MS.
I know you are on the Swank diet, and I’m not a fan of it. But anything that can help is worth trying and it’s such a personal and individual problem.
1 Like
I take a D3/Calcium supplement twice a day. I also take multivitimin, marine fish oil, B-Complex, Ginko Biloba and Biotin once a day.
I was dx in Dec2010 decided my self to take Vit D as I had heard it was good for Ms 1000ius and now Ms nurse recommends 3000ius and so far no serious relapses.
Do try the vitd3 oral spray - lt is sprayed into the mouth where it is quickly absorbed straight into the bloodstream. lf you take the vitd3 tablets or gels they go into the stomach - and very little of it gets absorbed. lt is fat soluble. By the time the digestive juices have worked on it -very little is left. l read all this in Pathways magazine sometime ago. lt is estimated that only about 10% of the pills actually work because of this. Great magazine is Pathways for us with MS. So much information about latest test and research.
l have started taking 8 Biotin a day. As you cannot overdose with it as it excess gets flushed away by kidneys. l will let you know if l feel any benefit. There are several of us on this site who are now taking it.
MSSentials a supplement for pwms - from US - it has over 40 components - and Biotin is one of them. The tablets are huge and hard - but its the smell of them that make it difficult for me to swallow -especially as you need 6 a day.
I took 10,000iU of D3 a day for several years. When I finally got round to having my blood levels measured, they were something like 350 nmol/L (trying to remember the correct units here). This is way above the recommended amount, which I think is about 100. My neurologist was very reassuring about it - he said that toxicity levels are up at 750 and that there have been studies to see whether people with MS see benefit from being up at 300 - 400 (because you don’t see harm from these levels).
To get my levels back nearer normal, I didn’t take any for months and then I started on 5,000iU a day. When I had my levels measured in January, I was down at 90. I think that’s too low and so I’ve gone back to taking 10,000iU a day. My GP is happy to get my levels checked every six months or so.
My physical health has been deteriorating through all the ups and downs of Vitamin D. My mental health is fine though…
l have been taking huge amounts for some years - several years on 20.000ius daily - never managed to get my levels higher then 98 - which is too low. Now l am using the spray - so will give it a few months to see if it improves. We definitely need a high amount - and it does show we do not absorb it well. At least you saw a consultant who had some knowledge of vitd3. The one l spoke to about it said just drink more milk! And he said there is no test to see what levels you are. Then he fell asleep. This chap is head of the Rehab hospital in Leamington. l refuse now to go and see him.
TBH I think my history with vitamin D shows I don’t have much trouble absorbing it. I do believe that people with MS should find what their vitamin D levels are and get them to the recommended levels if they can. But they may still see deterioration in their physical state (as I have).
My Vit D level was 90 and that’s after being on 1000ius for quite a long time I thinks that’s classed as top of the range at present guidelines if I’m wrong please let me know x
From what l have learnt about vitd3 - for us with MS - 150/225 nmols is the optimum level. So 90 is rather low - l cannot get mine over 98 and l was taking 20.000ius daily. The levels most of our GP’s work on are so out of date with recent research - but the NHS will take 50yrs to admit they are wrong and another 50 to act on it.
Levels of 300 to 400 are not considered too high now.
Hi I’ve also been diagnosed with an active mri scan seeing neurologist on the 13th to find out more but I think I’ve had it for 12+ yrs. I’ve purchased a load of vitamins including fish oil and vit D3. These doses are only 25mgs and not the 5,000 just (whatever that is) I take one fish oil, 1 vit D, 1 vit c and copper with zinc. When I remember. How much vit D do you take?
Thanks (a new MS person, a bit scared and uncertain about the future)
Hi Rachy,
I too am newly diagnosed and discovered 25mcg Tablets are 1000 iunits. My MS nurse told me to take 1000-2000 iunits but I know some literature and people here have been told to take up to 5000. Hope that helps.
Snowqueen
It is simply wrong to say that vitamin D levels of 125 nmol/L are too high and (by implication) could do you some harm. The toxicity levels are up at 750. Like I said above, I have had levels above 300 and I never saw any of the symptoms you get from vitamin D poisoning.