Hi all, Have been doing some research today.min the absence of any help from my neuro, after being diagnosed, My ms nurse and i have put together a cocktail of vit D, vit B12, omega 3, zinc, calcium and magnesium. But today I have read loads of research into the benefits of cinnamon upon the symptoms of ms and wondered if anyone has tried either the tea or tablets? Thanks Catherine
Hi Catherine,
I take 1/2 tspn Ceylon cinnamon when symptoms are coming on. I take in a bit of hot water in a glass. Doesn’t dissolve as it’s organic but does mix and then swig it down very quickly. I think it definitely helps. It’s meant to have really good anti-inflamatory properties. I wouldn’t use the tablets as they use the cheaper type of cinnamon, Cassia which can be toxic in large quantities.
For me, B12 definitely helps, I had a really bad attack at the beginning of the year. I had about fifteen different symptoms. I did a lot of research online and thought it may have been B12 deficiency as the symptoms are very similar. After a week, my symptoms started to go and felt really good. After a couple of weeks I started to get an adverse reaction as I was taking too much. So, I now take a maintenance dose of 100mcg. This seems to do it for me. The same for vit d3 , I take 1000 iu a day, most people would recommend 4,000iu but if I took that I would be bouncing off the walls.
Hope this helps.
Adrian 
Hi I am newly diagnosed and have started taking vd3 and omega 3,6,9 and evening primrose. I would like information on quality b12 tablets and the magnesium, zinc and calcium as when you look there are so many and it would be great to know the correct dosage. I have looked into the cinnamon as well and would love a link to a reputable site to purchase any of the above. Do any of these interfere with how the dmds work as I will also be starting these soon. Many thanks Zoe
Hi Zoe, I take the following; 1000 iu vit D, 250’mcg b12, 1000 mg omega 3, 15 mg zinc,m400 mg calcium,m200 mg magnesium. I don’t know if they interfer with DMD’s as I’m not on them. And I buy them from simply supplements as I have used them for years and are good value. At he moment they have a buy one get one free offer on. Catherine
Hi Catherine,
You say you have been on them for years. Do you think that they help? Why don’t you take dmds? Do you think that you can manage the disease through lifestyle alone? I am not on dmds either but I will have the option of taking them next them next year. I would prefer to do through diet, lifestyle and supplements if I can. Is this expecting too much?
Adrian
Hi Adria, I have used the company for years for other supplements but only started this cocktail about 6 weeks ago, after diagnosis. Yes, they definitely help me. I have found the fatigue has lessened and I have a better sense of health and well being, if that makes sense!! Although my ms was only officially diagnosed 6 weeks ago, I had my first episode 10 years ago. An mri showed lesions back then but the neuro but it down to stress and I was discharged. I have had multiple episodes since but only after this diagnosis has my gp linked it all together and made sense of it all. So I am not on DMD’s as I haven’t officially had two relapses in two years which I believe is the eligibility criteria. However, I have to say, I have mixed feelings about them. I know fellow sufferes who manage, very successfully, their ms through diet, lifestyle and alternative / natural / holistic interventions and therapies. Hope this helps. Catherine
Thanks. I didn’t know the ‘elegibility criteria’ is two in two years? That’s interesting. I had my first 4 and a half years ago, I think and then one 2 and half years ago and then one at the beginning of this year. So, I’ve been having on every two years. I have been absolutely fine until this year where I have had lingering symptoms. Previously I would just have an attack and then three months later I would be absolutely fine. I would like to go on BG-12 when it is licensed.
Anyway, thanks for that Catherine. Really appreciate it.
Adrian
There may be something in the cinnamon suggestions, but it’s not been properly studied so there is no way of knowing how much or what type works best or even if it does anything at all for MS.
I think it’s important that people understand that there is more than one process at work in MS too. One is inflammatory (causing relapses), one is not (causing progression). And although it’s called an inflammatory process, there is very much more involved - lesions are only inflamed in the beginning and reducing that inflammation (i.e. with steroids or whatever) doesn’t change the outcome: we are left with whatever we are left with.
The most common recommendation about vitamin D3 is 5,000iu a day. If you are wary of taking that much without medical guidance, then you could get a blood test, take a supplement (e.g. 1,000iu a day), wait 4 weeks and get another blood test, adjust your dose (e.g. go up to 2,000iu a day) and repeat until you get your D3 level above 125nmol/l, which is the generally recommended level for MSers. Note that lab results commonly report D and not just D3. Vitamin D is a combination of D2 and D3. D2 is irrelevant - you need to check the D3 number. (I did this and, after a while ended up taking 10,000iu and 5,000iu on alternate days, which I still do.) Note also that the current NHS guidelines for vitamin D were designed to prevent Rickets and state that 50nmol/l is the low end of normal. This is insufficient for people with MS, but most GPs are not up to date with this. You need to be your own expert in this, as in so many things with MS 
Vitamin D3 is the only supplement shown to have a positive effect in MS. MSers are more likely to be deficient in vitamin B12, so it is sensible to get tested for that too. There is no evidence that B12 supplementation does anything for MS, but I do take 100mcg a day myself as B12 is supposed to be good for cell repair, it won’t hurt and just might do some good. Most people get plenty of B12 in their diet though. Omega oils were thought to be good for MS, but more recent research has shown that they don’t do anything. Magnesium can be very helpful for spasms, but if you don’t have these, you should work out why you’re taking it. Same goes for all supplements. Every single thing that goes into our mouths has an effect on our bodies, not all of which are going to be good.
There is limited evidence that diet does anything for MS and there are a million crackpot ideas out there about what does and doesn’t work, some of which are very convincing. A healthy diet is sensible for everyone though, whether or not they have MS.
A recent study showed that alcohol is good for MS. (Not that that’s an excuse to go overboard mind you! Too many other risks with heavy drinking.)
Lots of studies have shown that smoking is bad for MS (both in terms of getting MS in the first place and having more severe MS).
I haven’t covered it all, but the upshot is that MS is not going to be cured by any combination of supplements and/or dietary changes. MS is caused by something making our immune systems wrongly attack our own bodies, not by bad diet.
Re supplements and DMDs: they don’t interact. You can take what you like while you’re on a DMD.
One final point: DMDs are the only things scientifically proven to change the course of MS.
Karen x
PS The current eligibility criteria for injectable DMDs are to be over 18, to be able to walk 100m without assistance and to have had at least two “clinically significant” (i.e. disabling, debilitating, serious) relapses in two years.
Thanks Karen. Instead of using the money to buy the cinnamon capsules, I’ll buy a bottle of Ameretto instead!!! LOL
Hi Karen,
Thanks for that. I’m not advocating that anyone should throw away there DMDs and start to treat there MS using lifestyle and supplements alone. This is a course of action that I would like to try. I feel that I have had MS for about 6 years. I am 45, nearly 46, I am extremely fit. I do have some minor symptoms from my last MS attack but nothing major. I think that I have MS because I am genetically predisposed to it and that environmental factors have played a massive part i.e. smoking, drinking and stress. I have had an incredible amount of stress in the last six years. I have an incredibly healthy lifestyle now. I don’t drink, I don’t smoke, I avoid wheat, sugar and dairy products which is really hard as I have a really sweet tooth. Obviously, I still have stress though.
All that I am saying is, that I would like to try and manage the MS through lifestyle alone for the time being. If this doesn’t work then I will gladly take DMDs. I would very much like to try BG-12, as this has very little known side-effects. I would very much like to try Fumaric acid. If I take DMDs straight away, it will be impossible to tell whether my lifestyle is having an effect. As an example, eight years ago I began to get sinusitis, from then on I got it every year, five years ago I got it three times in one year. At the beginning of 2010 I had it for three months, I felt really awful everyday and had very infected mucus. I went to the Doctors and they just gave me antibiotics which got rid of it but it would then come back again. I did a lot of research online and I decided to cut out milk and clean my sinusis out every day with a syringe. After a week my sinuses started to clear. Since then I haven’t had a full bout of sinusitis, apart from when I get a cold. I know that you cannot compare sinusitis to MS. I would be very foolish to do so but I can make a difference by doing the right things and making lifestyle changes. If I had relied on the local GP, I would still have a very severe problem.
The pharmaceutical companies do not provide medication to make us better they sell medication to make them money. This may be a very dangerous thing to say but I think it is very true.
I have an appointment with my neurologist very soon to discuss my second MRI, so I will be discussing my options with them.
Thanks for all the info. You are always very helpful.
Adrian
Adrian. Read your post. Really interesting. I have recently been diagnosed with RRMS. I am due to start Dmd in jan as I have had two severe relapses in past 18 months. I have suffered with sinisitus can you tell me what you did to clear it with a syringe. Sounds fab. In USA it is common practice to flush your sinuses but not heard of it in uk As for diet. I have cut out wheat, diary, but can’t bring myself to cut out sugar. I must say feeling much better for it but in middle of severe relapse so can’t really say what are full benefits. I am researching into anti inflammatory aromatherapy benefits during relapse as black pepper essential oil and rosemary meant to help. I have had a full blood count as I asked the gp if I had a b12 deficiency. He said all ok. Should I still take supplements. D3 seems very well spoken about where do I go, health shop, and how do I know how much to take? Thanks your post was very informative.
Hi Hop Along,
Sorry for not responding sooner but up in glorious Wales enjoying my father’s 79th birthday. He has emphysema, so he isn’t that well at the moment but we have had a great time.
I had really bad sinuses about three and half years ago. After about three months I cut out milk, I drink Soya milk instead and started to rinse out my sinuses with a warm saline solution using a syringe that I bought at boots. After about a week it started to clear up and I felt a lot better. I got a cold recently and it went on my sinuses again. I started rinsing again and it cleared it up. There’s also a product called Nellmed which my friend uses which is meant to be really good.
Supplements, I take Omega 3 1000 mcg, Vit d3 1000iu, most people take 5000 iu but i seem to go a bit manic if I take so much. I also take vit B12 100 mcg. I sometimes take a probiotic and also cinammon. I think that the vit b12 and the vit d3 are really important. I also think that avoiding certain food stuffs is also really important. I really wish I could seriously reduce my sugar intake but I do have a very sweet tooth. I’m pretty sure that sugar is seriously bad for you. I’m pretty good most of the time but some days I overload. Like today, I made a load of meringues for my family and filled them full of strawberries and cream. Oh well, after a long walk in the icy, cold Welsh moutains, you need a wee treat, don’t you?
I notice that each of my attacks have been early in the New Year. It has to have something to do with Vitamin D3. If you have had two sever relapses in the last 18 months I would definitely go for the DMDs, as Karen has said they are the only things that have been clinically proven to reduce relapses. I think that you should not just rely on mainstream medication alone and that you should be very proactive in combating this disease whatever that may be.
Hope that helps.
Adrian x
Hi, if you haven’t read Judy Graham’s Managing MS Naturally: A Self Help Guide to Living with MS is excellent.
Wendy
lol, I knew we were kindred spirits but this confirms it!
Just thought…a splash oh ameretto in the hot tobbie…yuuuummmmmm!! Xx
Pure orgasmic pleasure for the first time since…I’ve forgotten when…
If anyone’s watching this thread, there’s gonna be a lot of Harry met Sally moments…and we’re gonna get the blame…and I’m gonna get the blame for leading you astray…again!!! You’re gonna get me a right reputation…xx
Oooh I can do a good Sally moment! I think you got yourself the reputation though - it was so so innocent on here until you came along
Moi…??
This was a funny post you’d have been a part of a while back…
http://www.mssociety.org.uk/forum/new-diagnosis-and-diagnosis/where-are-people