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Vitamins and supplements

Just wondered what others were taking? I’ve read flaxseed oil is good for ms … Any advise would be great Cheers Scott

For me, as for many people with MS, vitamin D is the most vital. A dose of 5000 iu which seems to be the right dosage. My vitamin D levels are fairly regularly checked so I think I’ve got that right. My neurologist believes in vitamin D and adds it to blood testing every time. I also take calcium to help with vitamin D absorption plus magnesium which is supposed to help with spasms, though I’m not convinced that it does! I also take vitamin B12 which is meant to aid nerve function.

For me, as for many people, I got into the habit of taking these things and have been too nervous to stop. It’s not a hardship to take them and you never know what will help!!

Sue

True but can’t do any harm right !

Hmmm.

It’s not quite true that vitamins and supplements can’t do any harm.

Whilst I would agree with Sue that vitamin D is the key one, for most people with MS, and the only one backed by solid and increasing evidence (the rest tend to be more of a hope than evidence-based), even vitamin D isn’t harmless in excess.

We used to have a regular poster here - a pretty educated and knowledgeable one - both in general, and about MS/neurology in particular. She managed to overdose on super high-strength vitamin D.

Worse still, the symptoms were very similar to MS, so she had no reason to suspect her mistake. She simply assumed her MS was playing up.

I’m not sure quite how it came to light, but she must have eventually had her vitamin D checked, either at her own request, or the request of her doctor, and it was sky high - she had to stop immediately.

She at least had the good grace to confess her mistake, and warn others, as she’d always been a strong advocate of these very high doses.

Although vitamin D deficiency is common in people with MS, it’s not inevitable. So first you should get a baseline vitamin D test (your GP or MS nurse can probably arrange it), to check if you really are deficient. If you supplement aggressively, without knowing if you’re deficient, you are at risk of overdose.

If the test shows you would be well advised to supplement, you should still be monitored from time to time, to check how it’s going - whether you need to increase or reduce your supplements. That is particularly true if you go for the very high doses favoured by some here.

I don’t think you’re at much risk if you take ordinary high street doses, but some people import much higher specially. I wouldn’t recommend that, unless you’re sure you’re deficient, and have got the go ahead from your neuro for those higher doses.

Tina

Tina is right, there was someone who posted on here about taking super high doses of vitamin D and ODd on it. Mine I know is the right dosage because it gets tested (at the moment every month along with everything else! I apparently have veins like a drug addict I’ve been stuck so many times!) So, yes, speak to your MS nurse, neurologist or GP about getting vitamin D tested - and while your at it, get them to test B12 too.

So yes, vitamins, minerals and other ‘alternative medicines’ can hurt you, so check with your doctors before you start anything.

Sue

I think supplements are just a costly way to get the right stuff inside of us.

If we eat a really good healthy diet, there is no need for all these extra things.

The only thing i take is one garlic tablet in the morning, and one cranberry tablet for my bladder. The garlic for my blood pressure.

I eat really well, all the dark green vegetables and colour vegetables, and fruits, dates, prunes, dried apricots all these things are so healthy and they contain iron and everything we need. Fish, chicken, whatever. I have also found the NAKD bars are a fab way of getting healthy as they have all the basic yummies inside which are full of goodness.

I have also found Almond Milk and coconut milk. Its LUSH. I drink either one every day. I have a full glass, and both are full of vit D and B12, and B complexes… Mind you i did buy a bottle of supplement and took one look at it, and thought how am I supposed to swallow that lol.

I had my routine blood tests done last week, and everything is spot on perfect.

My GP told me to eat well, and not to supplement she said a good diet and some sunshine is the way to go. If we take exta stuff and we dont know about it, the body has no idea what to do with it and some can become toxic.

Healthy diet - lots of fresh water - NO smoking or alcohol lol…

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I do take most of the supplements already mentioned. I take 3000iu per day of Vitamin D although I have yet to seek a blood test, but will now do so early in the New Year.

Turmeric is being trumpeted as useful in suppressing inflammation. It is alleged that it aids in the inhibition of a protein, IL-12, which causes damage to the myelin sheath. There don’t appear to have been any significant studies to support such a theory, as far as I can see from a very cursory search.

However, the general consensus is that the most effective way to ingest Turmeric is by using it in cooking, and not by taking a supplement. I am increasing my use of it in cooking; it can’t do any harm. I happen to enjoy spicy food anyway, so what the hell.

I agree with Goldengirl63’s views on diet. I use a blend of coconut milk and a smoothie on my muesli. Lovely.

I have been a vegetarian since about 1975. Of course, it did not prevent the onset of MS, but the culinary possibilities are vast and very flavoursome. I feel a lot better for it, and I am also thankful that I am not eating animals that have been force fed with antibiotics all their miserable, short lives. Yes, I know there are organic and free range options available, albeit very expensive. This is not meant to develop into a holier than thou rant against meat eaters, only against the unnecessary and routine use of antibiotics, mainly to induce unnatural growth, and the conditions in which factory farmed meat is produced. As the routine caveat states, I have many friends who are meat eaters, but we do not fall out over meat consumption.

I have heard of Tofurkey but has anyone created a walking, gabbling Qurkey out of Quorn?

Merry Christmas

Alun

Hi Alan, i think you can buy tofurky in the UK now. I did try quorn products but they made me feel sick every time. Have no idea why. I dont eat much meat, well no pork, lamb, or beef, only the occasional free range chicken my friend farms. The rest is fish, or vegetarian. I quite like vegetarian meals, and eat at least 3 a week, all vegetarian, the rest are mainly fish, and sunday i hve chicken.

This turmeric thing well I think its all gotten out of hand. Its like everything, and there is no scientific evidence is does anything. I found this website when i was reading up about it. So many people are conned so easily and someone is making a lot of money out of people.

The one thing I know is good for us is to go gluten and wheat free, or at least gluten. I am as gluten free as I can be, and if i eat anything major with it in, like bread, it gives me terrible time with my legs and my burning gets worse. Without it in my diet i really feel tons better.

I do eat well,and it doesnt cost me loads of money either.

Merry christmas. xx

Goldengirl63,

Thank you for the link. It is clear that no proper clinical studies have been carried out to date. I will continue using Turmeric in cooking but I will not hold out any hope for it to be of any particular benefit in MS.

I am interested in your comments about gluten. This is not something I have thought of. I rarely eat bread but I do use wholewheat flour for cakes. I also use spelt and rye grains in salads. I would find it difficult to ditch some of these.

Have you felt better for going gluten free? Can you recommend a website which explains the link between gluten and MS?

Best wishes

Alun

After being diagnosed i went on advice to dietitan/ nutritionist ? And was advised to cut dairy , no pork , and gluten free.

Among other things, gluten is an irritant . See if you can check out john mckenna , nutitionist . Sorry but busy and on the phone .merry christmas everyone :))

Some great info thanks …

I there are some out there, even on this society i think there is an article about MS and Gluten.

A lot of people it appears with MS have a gluten sensitivity. I was tested, and yes i have one too, and a sensitivity to wheat.

I do know there is a link between inflammatory disorders and gluten. My brother for example has bad arthritis, and in the end went totally gluten and wheat free, and after six months his life is transformed.

There is no miracle cure though. I just find that if i go gluten free on the heavy stuff, it does make a difference to my fatigue, sluggishness, and burning and spasms in my legs.

As soon as i trip up and eat say cake or bread with it in, within a few hours my stomach swells, and my legs start to burn.

As I have a sensitivity to it, i do try to avoid it, but its very hard as its sadly in a huge amount of things.

This is one link, but there are loads of stuff out there about it.

I do know this. When i went totally gluten free, i mean TOTALLY, i kicked everything out with it in, in one month I lost 1 stone in weight lol, but i was eating just as much, but not with this stuff in it. I thought i would just try it and see if it helped and to be honest for one month i was tons better in myself.

Thats why i still try after several years to go as clear as I can.

Eating a nutritious diet boosts overall health and helps with MS management. But knowing what not to eat also may play a significant role in your well-being.

I took 2000iU of Vitamin D3 a day for several years. I got up to much higher blood levels than recommended - I was up at 340 nmol/L when I finally got tested. The recommended levels are 100 to 150 nmol/L. I was worried that my levels were so high but my neurologist was reassuring. He said that some doctors have done experiments getting people to levels higher than this and not seen problems. He said toxicity levels are up at 750 nmol/L. The primary symptoms of very high levels of Vitamin D are poor appetite, nausea and vomiting - I never experienced any of these.

Last time I had a blood test to check, my levels were at 190. I’m OK with this, but I have started taking 500iU, rather than 1000, so they drop a bit from here rather than go up.

I also take Biotin (aka B7) and B10. They don’t seem to be making any difference to my MS symptoms (which are getting steadily worse) but my hair and nails are growing at a great rate.

I also take flaxseed. I don’t really count that as a supplement - I really on it to keep my bowels moving. It mostly does this, although I did have a truly horrible experience of constipation a few weeks ago. Like I said, neither the supplements I take or Tysabri has stopped me from becoming steadily more disabled by MS.

4000 IU of D and 1000 B12 right here

Hi Scott,I take Vit d3 1000iu (25ug) and Vit C effervescent 1000mg Both 1 tablet a day. There is also info that vit d may in some way help MS. I think some part of it binds to the cells that attack the nerves and stops them or something (look it up) for a more in depth report heehaw!! Hope you’re enjoying the festive period. Terry

There was an article in the Times today saying that high dose Vitamin D is good for people with MS!! As if we didn’t already know!

Sue