MS Diet

New diagnosis and before diagnosis
1

I am sure this topic has been done to death but I am a newbie still and haven’t read anything about it yet.

I have only just discovered tonight that there are two main MS diets ( Or at least, that’s what I have found so far…): The Swank MS diet and the Best Bet diet.

I have only skimmed over the websites. I wasn’t sure whether I need waste my time on them so thought I would post here first. I know a healthy diet can help any condition, it goes without saying, but is there any point in me reading about these diets?

Is anyone on any special MS diet? Or has anyone tried any of them?

If there is a thread about this that someone can direct me to then feel free to share it with me :slight_smile:

Thanks

Jo

2

Morning! I’m planning on looking at diet & nutrition along with some alternative therapies - once I know for definite what’s wrong!!!

For the time being though I know nuttin!!!

And I intend to carry on eating anything & everything that comes my way!!! xxxjenxxx

3

There are mixed opinions about these diets. In my opinion, the people who follow them tend to be rather zealous (I’m putting that politely!) and many are extremely anti-DMDs. While that in itself doesn’t actually matter if the diets work, there is very little scientific evidence that they do very much for MS. There was, however, a recent study in Australia that showed that diet could improve some measures of MS (sorry, but I can’t remember which ones, possibly relapse rates?) by maybe 20%, but other studies have shown no effect, and studies of other things (e.g. vit D3) have shown bigger effects. What adds to the confusion is, e.g., a recent study in Europe showing that things like booze and chocolate are actually good for MS (but these are disallowed in the diets). The upshot is that MS is massively variable, coincidences abound (starting a new “treatment” and your MS going quiet does not necessarily mean that the treatment worked - after all, MS regularly goes quiet all on its own and sometimes for a very long time) and different things work for different people, physically and emotionally.

I for one am not tempted to give up meat and booze (not that I take either to extreme!), but I perfectly understand others wanting to try it and sticking to it if they feel it helps them.

Karen x

4

Hi Jo, My ms nurse recommended following a Mediterranean type diet, but when I asked her what that was she just said basically a nice varied healthy diet. Ii was practically veggie before this and have started eating more meat, but that’s just me! Chis x

5

Hi Jo

I know there has been some comments about the use of evening primrose oil (or linoleic acid) which reduced relapse rate by 20%. There is a mention in the nice guidelines below and a comment on MS Trust. I’m not sure how often people are really told to take this supplement (link below) http://publications.nice.org.uk/multiple-sclerosis-cg8/guidance

Maybe worth asking the others who are diagnosed whether they have been asked to take this.

Reemz

X

6

Hi Jo

I know there has been some comments about the use of evening primrose oil (or linoleic acid) which reduced relapse rate by 20%. There is a mention in the nice guidelines below and a comment on MS Trust. I’m not sure how often people are really told to take this supplement (link below) http://publications.nice.org.uk/multiple-sclerosis-cg8/guidance

Maybe worth asking the others who are diagnosed whether they have been asked to take this.

Reemz

X

7

Afternoon all and thanks for replies :slight_smile:

Yes, with a condiiton such as MS, with so many different sides to it and such a varying of severity, it must be so difficult to know if something is working well. Especially if you have the RR type of MS. The natural course of the disease may coincide with a new diet and therefore make you think the diet is working.

Loved the bit about chocolate and booze being good for MS! Haha!! How funny. I don’t really drink, or very rarely, but I do eat far too mujch chocolate. I am such a chocoholic and sweet addict. I have been comfort eating for the past 7 weeks that I have had my symptoms…and gained weight :frowning:

I don’t have a definite DX, but if I do have MS, when will someone speak to me aobut diet and vitamins and meds etc?

I tend to go all out when I decide to do something (eg.diet) but then it suddenly dies a death just as soon. I am a bit ADHD with my TS which is very typical. It’s all or nothing with me.

I think I shall do a little more reading about it anwyay but not putting too much hope into it. I am mostly very dubious about mircacle cures anyway. I’ve read some really ridiculous ‘cures’ for TS that have just made me laugh. One of them included being exorcised! Phaha!

8

http://www.direct-ms.org/rogermcdougall.html

This evening/monring I have just come across this on the internet. it’s a diet regime by a Roger MacDougall.

It seems impossible but apparently he has sent his MS into what seems a permanent remission for over 40 by following his diet and he died in his 80’s with no MS symptoms.

Had this diet been explored since by MS medical research?

Has anyone heard of this diet or followed it?

9

Hi Jo,

I looked at The Best Bet diet a couple of years ago and to be honest I didn’t think that diet alone could make that much of a difference to my ms. On top of that I couldn’t find real scientific evidence to say any differently either. So I talked to my neuro about it and he said the same thing - that what little research had been done hadn’t been scientifically proved to be beneficial.

Anyway, I decided to go ‘gluten free’ - rather than going the whole hog of The Best Bet diet which to me seemed really extreme. All going GF did for me was give me a flatter stomach - which is a bonus I know - but after a year or so I weighed everything up and decided to forego the diet.

For a start, just going gluten free is really really hard. There are so many things that you can’t eat or drink and every label has to be checked - it’s shocking just how much gluten is used in foods & beverages. Plus it can sometimes be hard to source alternatives and it can work out to be quite costly too.

Whilst some people may find them beneficial, ‘exclusion’ diets definitely aren’t for me. Personally I think a general all round healthy diet is the way to go and I don’t think that cutting out whole food groups is beneficial simply because our bodies need something from all groups. I also found that ‘eating out’ and visiting friends & family was a bit of a drama too when I was gluten free!

My advice would be that if you do decide to try an ‘exclusion’ diet then make sure that you’re really clued up about finding alternatives to whatever you’re excluding, otherwise you could end up lacking in the essential vitamins and minerals that the body needs.

As Karen says, it’s understandable why some people do decide to try different diets so I guess if it interests you then it’s a case of try it and see. But for me I much prefer to enjoy my food and drink.

Debbie xx

10

Hello Midnight, I too have been wondering what can be done, can’t help thinking that I’ll feel better for doing something rather than nothing. I’ve started taking d3 (1000iu per day - quite a lot more than the usual recommended dose) and I shall get my hands on some evening primrose too as well as a good multi-vit. I’ve been put in touch with a friend of a friend who has MS and she follows the paleolithic diet!! I shall post the link for you - she thinks it helps but who knows :slight_smile: I did an MA many years ago in the philiosophy of medicine, it is for sure proven that the placebo effect accounts for the success of c. 10% of all medicines so placebo me up is what I say. Meanwhile, I’m beginning to see that the biggest battle will be with myself - quality of life is about attitude I realise. I happen to drink far too much, eat rubbish and take next to zero exercise - perhaps MS will be the making of me! xxx

11

Just a quick word about linoleic acid. It is recommended in the current NICE guidelines, but these were published in 2003 and are currently being revised. One of the revisions that is likely to change is the linoleic acid recommendation - there isn’t evidence to support it.

Also, a word of warning. Any diet, med, treatment or anything basically that claims amazing results for MS is likely to be making someone a lot of money, but not doing what it claims for the MSer. Please be cautious.

Karen x

12

Eww! I get annoyed with these ‘miracle cure claims’!!!

This week there was a woman from Nova Scotia who said she had had very advanced and disabling MS for 3 years and that she was practically ‘cured’ by a particular diet/supplement programme. She posted the same long winded description on every single MS group/page on FB - and there are lots!!!

When I looked at her profile it was obvious that she was selling this product and several of her friends were 2012 top sellers!!

I have no idea if she really has MS but it really disturbed me that she was making these claims whilst making money from it! What was worse was that quite a few vulnerable MSers were exclaiming ‘how wonderful this is’ and begging for more information on how to buy it!! It made me fume!! x xxjenxx

13

Hi there, these are the links I was sent…

Hey Lucy, some facts about a good diet (she’s a bit of inspiration in all this)
http://www.youtube.com/watch?v=KLjgBLwH3Wc

Healthy diet, healthy mind (room for cake on wednesday though)
http://www.paleoplan.com/

For sure they ain’t no cure but we all need to look after ourselves and it’s also just interesting to see what’s out there.

xxx

14

is she the person mentioned earlier? selling the products?

15

Before anyone loses their rag with me!! It’s true, I should have watched this and read it before posting. And finally…my friend Roland’s mum spent most of her 70s in a wheelchair but was walking at her 90th birthday last month…she did not follow this dietx

16

Afternoon Seaside x

I know different foods can affect different people - my son has celiac and I see what it does to him when he goes off the gluten free diet x

For most of us though I think it’s a case of making sure we eat well, drink in moderation and get as much exercise as our poor bodies allow! I haven’t started any supplements yet and being a comfort eater I’ve been consuming anything & everything in sight!

This means I’ve put on weight and I know that affects how I feel both physically & emotionally - it sucks!! lol x

I keep telling myself that when I’m feeling stronger I’m going to get backon a healthy living plan !!! xxxjenxxx

17

Some interesting points here, of couse.

I’m not going to start any new diet yet as I am still waiting to find out what it causing my symptoms, so I am still at a bit of a cross-roads, right now.

I have also been comfort eating, Jen, and have put on weight. I haven’t been to take part in my usual aeorobics classes for 7 weeks now. I used to do 3 a week. I don’t drink or smoke and usually have a healthy diet but I do pig out on junk in the evenings when kids are in bed.

I’ve been doing a lot more of this lately.

I have heard so many false claims over the years about ‘cures’ for Tourette’s (which I have) and ADHD (that my son has) and I am not so naive that I would believe just anything, believe me. I’ve heard some right corkers. It’s just something that interests me.

I would not omit whole food groups or go all gung-ho about this. It is just worth a thought and a share of what I read.

Seriously, I am not about to throw out everything except soya milk and veggies in a bid to cure myself. lol.

The best piece of advice I have ever heard was on my TS video on youtube when someone recommended that I could cure my TS and the tics if I “Just stop ticcing”. Now, gosh darn, why didn’t I think of that! Pahaha! Hilarious.

Belle, yep, half the battle is with ourselves.

“can’t help thinking that I’ll feel better for doing something rather than nothing”

Exactly what I am thinking right now too. Early days, and I am sure everyone goes through this stage, early on, too ?

18

You just reminded me of something…

My cleaner used to see me napping/resting on the couch a lot. One day she said to me… “Maybe you’d feel better if you didn’t sleep so much?”

Kx

19

Wow, astounding piece of advice there too! :slight_smile:

:smiley:

20

Hi,

I’m afraid that I’m one of the zealots that Rizzo mentioned, and am here to spread evidence-based hope. That is because there is actually an awful lot of scientific evidence that changing diet can improve MS symptoms and slow, stop and/or reverse disability.

I follow George Jelinek’s diet set out in his book “Overcoming Multiple Sclerosis”. It is based on the research of Swank, who studied patients for 34 years (with a follow up at 50 years) and found that those who followed his recommended low saturated fat diet had low disease progression, and those who didn’t had high disease progression. The diet is to give up meat, dairy and cooking oils other than extra-virgin oils. The idea is that the saturated fats in meat and dairy get absorbed into the cells of the central nervous system and this triggers an auto-immune response where your body attacks these cells. (FYI Swank’s diet was slightly less restrictive than OMS and allowed some meat, which may explain why there was still some disease progression).

“Overcoming Multiple Sclerosis” is about more than just diet, and provides evidence about how other lifestyle changes, including Vitamin D and fish oil, help. I would definitely recommend reading the book. The comprehensive website contains a lot of the same information for free. This link contains a good summary: http://www.overcomingmultiplesclerosis.org/html/blob.php/Program%20Overview%20Pocket%20PDF%20v5.pdf?attach=false&documentCode=11098.

OMS is not anti drugs (or alcohol), though it is anti chocolate. That is why god invented Deliciously Ella’s Raw Brownies.

The OMS diet isn’t the only show in town. The other two most popular ones are Terry Wahls’ “Paleo”-type diet, and the Best Bet diet. There is not the same evidence for the effectiveness of those, though Terry Wahls is working towards getting evidence, which is commendable.

The OMS website contains a very active forum, and it is a recurring theme that our Neuros are not massively supportive about the OSM/Swank diet, and are at best neutral. The way my Neuro explains it is there is no “proof” that diet helps. Proof for him is about randomised control trials. The Swank diet was not an RCT, therefore there is no proof. Whilst my Neurologist may not have a medically accepted level of “proof”, we all have 50 years of scientific evidence that this diet is a real help for people with MS. That’s as good as we’re going to get, and is more than good enough for me.

All the best

Chris