Hi, I’m a newbie to all this posting and need some help !I
Ive been researching all over the net about what vitamins i should be taking and at what dosage and Im getting so confused by conflicting statements… At the moment all I’ve started taking is Vitamin B12 2000mcg a day and ive just ordered D3 5000iu.
Ive also come across the following : Evening Primrose Oil, Ginkgo Biloba, Magnesium, Flaxseed Oil, Zinc and B Complex.
These all seem to be talked about on this site and others but at what dosages and what is the verdict, i really need some advice as whne i go to see my doctor he basically just says all your blood levels are ok and to take normal multvits, NOT helpful
People say Vit b12 also but I tried this for 3 months and noticed nothing, also after seeing my haematologist she said b12 levels with me are fine something about size of red blood cells if I remember.
Alot of people and odd the study says about flaxseed but I don’t take this only 1000mg cod liver, 5000 to 7000iu of vit d3.
Was either Ginko of Ginsing could can leed to stomach issues bleeding etc in high dose, I was taking 500 mg of holland and barrat ginseng and kept getting burning stomach and did nothing really for energy levels or fatigue, Amantadine did work though (GP or Neuro bod needed)
Evening and star flower is good, Zinc is better with Vit C as zinc helps body absorb vit c and body need C to combat free radicals.
I would steer well clear of anything with Echinacea in it, you don’t need an immune booster (if it works)
If you can get hold of Simvastins (groval to GP) seams to do alot for MS in 80 mg doses 2 x 40mg Dr’s seam to think it slows MS progression, never eat grapefruit or the juice if you take statins.
If you take statins I believe taking q10 coenzyme supplements also (tescos started selling them £4.00) as the statins lower this level and you kinda need q10 for nerve function and also has heart benefits.
You can google the above and decide what you believe with the all the claims.
Gosh it’s all confusing isn’t it?! The only one my neuro told me to take was 5000iu vit D3. In addition I’ve chosen to take: B12 1000ug Omega 3 fish oil 1000mg Magnesium - 20ml I’ve given up dairy - there seems to be too much anecdotal evidence to ignore - eat loads of greens, veg & fruit, & everything else in moderation. My only vice (that I’m admitting to on this forum) is a regular large glass of red wine! I think you can go mad with trying different supplements. You can get most of your vits & minerals by eating a healthy & varied diet Good Luck Jane xx
I’m on some meds that say ‘do not take with alcohol’ When I spoke to my MS nurse I said I can live the rest of my life with MS but I can’t live the rest of my life without alcohol - she said that was fine! In moderation!
I’m on muscle relaxing drugs and alcohol does the same thing so I’m just a one glass person.
i take a multivitamin/mineral. morning and evening. they were developed to help with ms. i get them from healthy and essential (used to be essential health clinic) they are called AM and PM. i also take one of their omega 3 oils.
i dont know if they work but i’ve been taking them for years and am scared of coming off in case i feel worse.
i have a B12 injection every 4 weeks, prescribed by my gp and administered at a local clinic.now this certainly ups my energy levels.
Vit b12 1000mcg, vit d3 5000 iu, Magnesium 250 mcg, Omega3 1g (the high strength one from boots is good), Probiotic acidophilus 3 billion (Holland&Barrett).
I have found that vit b12 is really important for me. I had a really awful relapse at the beginning of last year. I had 15 different symptoms. I read about vit b12 defficiency and the symptoms are very similar to that of MS. I started taking vit B12 and my symptoms went within a week and the amount of energy I had was amazing. Unfortunately it wasn’t vit b12 deficiency but MS.
I am not on any medication at the moment and have been using the above regime for the last seven months without any problems. I also try to avoid dairy, wheat and sugar aswell and exercise as much as I possibly can. I only seem to have any problems when I have a cold or when I really overdo things.
Hi guys and gals, im a newbie here, i was diagnosed last May, im now on Copaxone, also my MS nurse adviced me to also take vitamin D, which im taking, but after reading the above posts should i be takinng vitamin D3? is this different from vitaminD?
Hi Ian, the vit D should be D3 as it is the form that is of use. I think It is widely accepted and so is the generally available form. The generally available tablets are of pretty low dose - UK recomendations were based on avoiding rickets, it seems, not general health and MS in particular. So 5000 iu is very often recomended fo MSers. The an EU body made a general recommendation of 4000 iu for adults.
Well its a very interesting thread and this is my first post on this forum. I just want to say that vitamins are important nutrition elements of our body and we can’t live healthy life without vitamins. Every vitamin is its own benefit and any deficiency of vitamin can cause health issue.
I’d just like to say a huge thanks to everyone for ur posts, I was just wondering if anyone has come across a multivitamin called mssential, I came across it on the web a couple if nights ago. It has only apparently been around since sept, I’d be really interested to find out if anyone has come across the website and what you think ? As if sound like the perfect vitamin… One pill covers everything !!!
Hi Jonathan, thanks for your reply, i am glad to hear im taking the correct thing, however, i am pretty sure my MS nurse told me to take 2 tablets of 10 ug of vit D daily, and double those up in winter, however, isnt that way short of the 4000iu that is recommended??
Hello all, I know I don’t live in the UK, I live in Belgium. My Neurologist or any doctor has never told me to take any vitamins at all, two months ago I have progressed to secondary progressive and still no mention of vitamins. I took myself off do Capaxone after researching that it was not recommended for SPMS, I’m sorry to add to the confusion, but I fear that I’m not getting anything from the doctors here. I am an American living and working here in Belgium so no doctor in the States- should I be more concerned???. Thanks for any all answers Greg
My GP put me on 20,000iu of vit D every other day together with vitB and magnesium daily before I had even had referral as my blood test results confirmed I was very low in D and B vits. Magnesium is essential as it helps the absorption of the vitD so my dr told me. I am one of the more fortunate folk in that I have a pro active new GP. Doctor also said it was important to have levels checked every 6 months to ensure levels are not too high.
If your doctor is telling you your bloods are ok then I’m afraid your wasting your money. Next time you pass urine, take a look at it. I bet its a pale yellow colour…that’s the waste from not needing the extra vitamins. Basicly money down the toilet.
Now to contradict mysef lol. There is a lot of good research into taking vitamin D…have a look on www.mstrust.org.uk for more info. Even I am thinking about taking it and I’m usually against taking supplements…just need to do a bit more reading.
Morning guys… Daily mail today has a piece on vit and ms I have been lucky to access a lot of research etc on ms and vits. Vit d3 really important. You MUST TAKE IT AT NIGHT as the nervous system repairs itself at night when in deep sleep. That’s why ms patients feel so bad if lack sleep. That advice was given by top researcher in London. No neuro or dr has ever told me this. I take 5000mui daily at night. Also omega 3/6/9. I had bloods done last week to check vit d levels and they came back at 83 after 4 months of taking high dose of vits. I have had bloods done before and told everything ok. Rubbish. You have to ask for a specific vit d test, it is expensive so they don’t do it unless requested. Makes me wander that is at 83 they must have been low before and never spotted. Think morale of this is be proactive, ask for vit d blood test, ensure you have calcium as it helps absorb vit d. Not seen must about b12 but will look into it In USA they use luximax supplement as contains vit d and also a natural anti inflammatory to help stop flare ups. After all ms is an inflammatory disease. I haven’t suffered with usual colds etc but ironically having small relaspe now but instead of lasting months think I have managed to nail it in a week or two. Fingers crossed as very fed up with this but hopefully on way out again of relaspe. Right arm went completely but within a week it is back. I am just shattered now. Interested to hear about vits. Let’s all pool our knowledge and beat this. Xxxx Hugs. Xxxx
l have been taking lots of minerals/vits - for years. Vitamin d3/magnesium/ omega 3 /B12 and probiotics. Have a shelf full -l must rattle. So l did look up MSSEssential and their multi vits/minerals for pwms. lts an american company - and the list of ‘ingredients’ is very long. lt would take you all day to get through them all in individual containers.
So l have ordered some. 180 capsules - but you do need to take 6 per day. Thats just a months worth. Start the year right.
Whilst looking for this website l did look at others - and noticed that as far back as 2009 it is recommended for pwms to be -not just gluten free but grain free. l know how better l am when not eating grain - and like others on here - l did look at The Gluten Summit - about a month ago. Apparently, gluten stops absorbtion of Vitamin d3.
l don’t know how long the delivery takes - will let you know when they arrive - and hopefully they will improve my lot!!
