Hello, I’m new here, you all seem to know a lot so I hoped you might have an idea about what I was told & have read a bit about. A how a high dose of vitamin D can help MS, & to discuss with your Dr. I would if I knew vitamin D any good for progressive MS, I’m guessing it’s not, hoping I’m wrong but I’m aware that there isn’t any comment about it, then it’s just like me to be in the wrong place!
Hi Loulla, and a big welcome to the board
Yes lots of us use high dose Vit D 3. Not sure if it’s doing us any good but it might be…and being we don’t spend a lot of time outside we probably need it anyway.
You can’t get the high dose on NHS. The best place to get it is Amazon. They do one called Healthy Origins. It’s 5,000 iu (that’s international units… It’s sometimes sold as 125ug, that’s the same thing). I think it’s about £10 for 360 softgel capsules…and small enough to swallow.
There seems to be a link between MS and Vit D3 so it’s worth taking. I used to have a lot of energy meltdowns (when you suddenly have the plug pulled out of you) and I think I’ve been having fewer on Vit D3. I’ve been taking it about 3 years.
This is a great board for anyone with PPMS or SPMS, lots of good advice, support and friendship…and we’re always happy to have a new member of the gang!
Nice to meet you!
Pat xx
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I put the link on here Loulla but it kept opening in my own account which seemed a bit risky…anyway it’s easy enough to find and is just under £10.
Pat xx
I have been taking vitamin d3 for years and can’t say if it’s made any difference to my PPMS, but it is good for general health, and bone health in particular, so not a bad idea.
This blog is worth reading. Multiple Sclerosis Research: ResearchSpeak: Moderate dose vitamin D supplementation has immune effects
I do appreciate that, thank you. I’ll investigate further. Managing MS is a night mare, however it’s a breeze compared to working out how to use this (or any other) site. Just me, can’t do FB (not that I want to) either, but I’ll persevere with this one.
Thanks again.
Thank you for that. I’ve had a look at the blog, there’s a lot to take in, but I think I’ve got the idea.
Thank you both for your input, think I’ve sent you both a message, I’m working out what happens when…I’ll bound to get the hang of it eventually!
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Hi Loulla
I agree with the others about vit d as it is thought to be a connection to MS, so worth buying some… You can also ask your GP to check your vit D level, just a simple blood test.
Welcome to the forum, hope to see you again, take care.
Pam x
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Loulla I am sure my sister used to have bit D injection once a month.
Don
Gosh Don, you AND your sister with MS, hard to bare!
I’m trotting off to my doctor, hear what she has to say. What I find disappointing is that doctors & the like don’t seem to volunteer this helpful information.
Thanks for your comment.
Yep we both has this wonderful condition
She used to say it gave her a real boost.
XXX Don
Loulla,
Welcome to the forum. Lots of brilliant people on here who can give you help, assurance, tell you where to look, a virtual cuddle or smile when you are down and above all a laugh when most needed.
I woiuldn’t be without them.
Anne
x
l think GP’s do not know enough about MS - and certainly not about Vitamin D3. lts best to find out as much as you can - and that sort of info can be found on the internet.
Google Vitamin D3 deficiency and MS.
also Vitamin B12 deficiency and MS.
l have had PPMS for nearly 33yrs now - and l do not take any prescription drugs - but l do take loads of supplements to help with my MS.
l take a high dose vitamin d3 - 30,000ius daily plus magnesium and vitk2. The three work together - l get my vitd3 levels checke regularly - 6 monthly - by CityLabs B/ham - its a postal service - just a pin-prick bloodspot test. Very easy to do - and your results can be emailed to you. l still cannot get over the 98nmols - but much better then when l started as it was 8.
B12 - l use the drops - that go under your tongue so that it is absorbed straight into the blood-stream. Natures Bounty B-12 5,000mcg sub-lingual - great for energy/clear brain/memory. And as with Vit3 - helps keep depression at bay.
Super stress B Complex - another good one for us. Especially, as it is proven that us with MS do have very low levels of these essential vitamins. Although Vitd3 is classed more as a hormone. And a deficiency is linked to 27 types of cancer as well as most auto-immune diseases.
l also joined the Biotin for Progressive MS group on facebook and l follow the recent trial of Biotin - another B vit.
With B vits - as they are water-soluble you cannot overdose as you just ‘pee’ out what is not utilised.
Turmeric is another l take - l buy most from amazon.
l do try not to eat any grain - mainly a low carb diet. l find bread etc kills all of my energy.
We need to be our own expert at this - keep as fit as possible.
Thank you for the welcome Anne, & thank you SPACEJACKET for that in depth report. I’m going to act on that, not that I really understand…but I have a friend who will, just need to pin her down.
It’s taken quite a while but I’m excepting The MeS, I need put my self out to understand a bit more about it.
I have heard about Turmeric & add it here there & every where. You’ve convinced me that I shouldn’t eat, particularly bread, an allergy test said not to & I have the same effects as you when I do eat it, going to have to be strong with myself & not treat myself to a w/e fried egg sandwich, I’m my worst enemy!
I am very grateful for every ones in put.
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Hi Loulla and welcome. My Neuro swears by vit D3 and insists all of his patients take 1000iu daily. You can’t buy it in a supermarket but your chemist may have it or should order it for you if you ask.
This forum has helped me so much since my dx, you couldn’t ask for a nicer group of people. We may not have all the answers but we have experience in living with ms and are usually happy to help where we can. I hope you’ll be a regular visitor.
Cath x
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Hi again Loulla, just be a bit careful with the supplements.
Start one and wait to see if you get any negative reaction. If you start a bunch together and you get a reaction you won’t know what caused it and supplements CAN cause negative reactions.
I started a magnesium supplement a year or so ago. Over a few days I felt my heart fluttering sometimes. Then it felt like my heart was skipping beats. I took my own pulse and in fact it was skipping beats.
I went to A&E and they said it was skipping every third beat and asked had I been taking any drug I don’t usually take. I said only a magnesium supplement bought over the counter at health food shop.
Guess what? It was the magnesium causing the skipping heartbeats. The consultant I saw said to me that just because it’s a supplement doesn’t mean it can’t cause a reaction…magnesium is actually is used medicinally to regulate a heartbeat, and had opposite affect on me. He said you have to be very careful with MS as the body won’t always react in the same way as it would with a healthy person.
Taught me a lesson I can tell you! So be careful if you are going to try supplements. Take one for a week or so and if ok, start the next one. That way if you have a reaction you’ll know which one to stop.
I don’t wish to sound negative but these things are not always as benign as you would think.
Take care,
Pat xx
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Again… all really helpful stuff & advice. Can you tell me please what iu stands for.
Thank you, Sara…no H.
Hi Sara.
Welcome to the forum, iu stands for international units!
Pat has given you such good advise…if you start the supplements start each one separately so that if you have any bad reactions at least you will know which one is causing you problems.
I hope we see you again on here.
Nina x
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iu’s is way Vit d3 is measured. With magnesium - you can use the magnesium oil - and massage it in to your legs - body- it is absorbed well this way. And as magnesium is also a laxative -using it this way prevents it getting into your digestive system. Magnesium is needed to help the vitd3 - and it also works well with pain/spasms/cramp etc. Epsom Salts is magnesium - and a handful or two in the bath is very beneficial. [lf you can get in and out of a bath-if not you can just soak your feet in a bowl of it.]