Has anyone else seen this article? http://www.bbc.co.uk/news/health-16086004 - it’s about how they’ve found a genetic link and a link to vit D deficiency to MS. I’m glad that they’re not sitting on their hands as much as I thought they were, but, really, DUH!! All you’ve got to do is look at where the MS is geographically and then look at the people who have it. The majority of people who attend my local MS Therapy Centre in Aberdeen (incl me, and my mum when she went) have light hair/skin/eyes, so would be prone to sunburn, so will avoid being in the sun if they can, not that this is a huge problem in NE Scotland. There are far too many instances of relatives having it for there not to be a genetic link - eg, in my family there’s me, my mother, and one of her aunts was in a wheelchair but they didn’t know what was wrong with her.
Not sure if taking Vit D now is closing the barn door after the horse has gone. I tried taking it for about a year, but didn’t see any difference, and generally, I think my MS is a bit worse than it was a year ago, esp my walking.
There’s growing evidence that vitamin D3 supplements can reduce the number of relapses that we have, but I haven’t seen anything saying that they make us feel any different or help reduce symptoms or progression.
Vitamin D3 deficiency does cause a lot of symptoms in itself though (muscle weakness & pain for example) and given that a lot of MSers are deficient, they are likely to notice a difference when they increase their levels. The rest of us probably wouldn’t, but at least we can hope that we’re doing something to reduce our relapse rates. No way of knowing for sure of course - we’d need an identical copy of ourselves not taking the supplements to compare to.
I haven’t noticed any difference since I starting taking D3, but I’ll be sticking with it.
I’d actually expected the BBCs “scoop” to be something most of us with MS had heard about ages ago, but was surprised to see this was a new finding.
I agree the evidence has been pointing to it for quite some time, with apparent “clustering” in families, despite it not being considered hereditary, and with increased prevalence the further you get from the equator (and from sunshine!)
But finding genetic evidence is a big advance on hypothesising that there “must” be some connection.
Like you, I do not know whether taking Vitamin D once already diagnosed is “closing the stable door”. I suspect the critical period might be in infancy, or even in the womb. After that, who knows? I still do take supplements, just in case. I haven’t felt any better on them at all, but, touch wood, I don’t think I’ve had a “proper” relapse since I started them, either.
So are they keeping it at bay, or not? I’m a bit reluctant to quit now, just in case they were. As they’re low risk, and relatively inexpensive, it probably does no harm to keep taking them.
But I’m rather wondering whether I’m moving to secondary progressive now, anyway, because I reckon I had it years and years prior to diagnosis. Fewer relapses might not be the result of anything I’m doing, but just part of the natural course.
At a research meeting put on by the MS Society, I spoke to a professor who told me that this vitamin D theory is now taken seriously. When I asked him for advice to give to children etc he said before his wife slaps on the sun cream, he holds his young daughter up to the sun for several minutes. I now take vitamin D3 from Oct to March, I also noticed somewhere on this site that people living in Scandinavia have less MS that they should have, for where they are in relation to the equator, this is put down to their diet, I presume they eat more fish than us.
Wish I’d done that. Considering my father was a fishmonger I should have!
My understanding is that vitamin D3 is not only a preventative measure, but also reduces the severity of MS. It’s actually a good treatment for a number of medical conditions, so worth persevering. I guess you could always get your levels checked to be sure.
You have probably read all this stuff already, but just in case.
Im taking vit.d3 as my levels were classed as in need of supplementation. I used to always play outside as a child, had lots of holidays and was always sunbathing without sunscreen as not a lot about skin cancer was known back in the 50’s. Ive always eaten lots of fish as its my fav. foodstuff and lots of veg as equally I love green veg and nuts. So really I should have had vast stores of vit.d3 to see me through the year, each and every year.
One thing Ive noticed when talking to other msers, most have gastric problems, either stomach acid problems, ulcers or problems keeping food down. Im therefore adding supplements to try resolve ‘leaking gut’ problems.
My own theory is that we each have a malabsorption syndrome at varying degrees and leaky gut. My ms symptoms still ride roughshod over me, however my stomach issues have improved dramatically and Im actually warm in winter which I put down to vit.d3 and Evening Primrose/Cod liver oil capsules.
Who knows, as we each look for that magic bullet. I do think vit.d3 shortage at a young age has a lot to do with lifetime levels - and leaky gut syndrome perhaps due to our diet seeping supplies?
Whammel, that is an interesting article, I think I’ll ask my GP about getting my levels tested. It is very windy up here tonight, but much worse in the central belt - I’m going to hide in the house just now and go and track down my wheelie bins tomorrow!
ln this weeks Pathways mag is an article about managing ms based on Professor Jelinek’s approach [his mother died of ms- and now he also has
ms]. His advice is to keep blood level of vitamin d high, that is between 150-225nmol -which may require up to 10,000ius daily. Vitamin D3 deficiency
is linked to other auto-immune diseases including lBS/Coeliac/Crohns/Psoriasis/ Osteo-arthritis/diabetes/and 17 types of cancer. So its well worth everyone to
take it. My vitd level was only 40 - and thats after taking 20.000ius for a year. But at least my ‘bone density test’ came back as within the norm.
After tripping up and fracturing my ankle in three places - two years ago - l am pleased that my bone density has improved. l am giving pots of vitd3 to
Hi Luisa, I don’t have any family member I know of who has ms but yes an interesting article. I don’t take vit d,but may be worth thinking about. As for exposure to the sun, I lived in Africa for a few years as a child, much warner and sunnier than here, lol. Luisa, I am in Aberdeen too, and yes it is a bit windy, good luck hunting down your wheelie bin, I diddnt put my recycling stuff out today because I thought it might blow away. Cheryl:)
I was interested to read this today as well, though was already aware of a possible link and have been taking my 5000iu since my diagnosis, and giving my children vitd3 as well. I don’t think it will cure me, but it might help a wee bit along the way.
just wondering if the people taking high doses of vitamin D3, could recommend a reputable company that one could buy some from please?
Also, do you know if vitamin D3 interferes with other medication if taken together or in the same 24 hour period?
thanks in advance to any replies,
tc
Anna x
[/quoteHi Anna,
l get mine via amazon Healthy Origins in 5.000ius or 10.000ius they come in pots of 360 softgels - l think about £15 for a years supply. l also use a sunbed to give me a boost occasionally. Our bodies absorb about 20.000ius in 15mins in bright sunshine [naked of course]. Our vet [a handsome young man] has been working in Australia - he said he suffers from psoriasis - which cleared up all the time he was in the sun. Now he is back here he is taking Vitd3. And he also uses the oil in the softgels to put on his skin. l also have psoriasis [another auto-immune disease linked with ms and vitd deficiency] which is why l use the sun-bed.
Hi Pat, You can open up the softgels and pour the liquid out or alternatively naturalproductscorp do a micro tablet. 200 x5,000ius now they are tiny and you can just let them dissolve. But the normal softgels are easy to swallow as they are so soft - not like swallowing a large tablet.
It depends what dose you’re wanting to take, Pat. I’m not on the ultra-high doses favoured by some MSers. But I do take 2 a day of Boots’ 25 micro-gram Vitamin D tablets, which is a compromise between the ridiculously low doses still recommended to the general population, and the high ones sometimes recommended for MS.
They are not gel capsules, but ordinary white tablets - quite small. I was going to say just a little bigger than a baclofen tablet (so easily mistaken for one…ahem), but I see you’re not on baclofen. Dunno how they compare in size with pregabalin.
If you want to take higher doses, I think the pill will inevitably be bigger.
The Healthy Origins 5,000iu capsules are really quite small - certainly smaller than a normal sized paracetamol. I’ve just had a look at my pill box - the vit D3 5000iu capsule is slightly thicker but slightly shorter than a pregabalin 50mg pill.
Hth!
Karen x
PS: I get mine from iHerb.com, but it takes a couple of weeks for them to arrive. You can buy them on ebay and on amazon, but watch the p&p charges. iHerb is $15 + $4p&p roughly. Don’t spend more than £15 on items or you can get hit by import charges and an admin fee of £8 (grr!). iHerb have a loyalty scheme, so if you want to order from them let me know and I’ll give you my code - it gets you $5 off your first order and I get about 20c I think :-).
Thank you for the information about the vitamin D article. After reading this I seemed to fall even deeper in love with everything George Jelinek. I am quite new to his regime, but I really am willing to give this a go for as long as it takes. My only query is with my confusion between the m.g. and the i.u. strengths. I do take 25mg vit. D3, 1,000mg Omega 3 and 1,000mg Vit. B12, but I just want to clarify if this is enough. Any ideas?