Some properly conducted double blind rundomised expensive study that would prove once and for all that if nerve cells are made off essential fatty assids that cannot be produced by our bodies and have to be provided in our diet, it makes a huge difference how much and what sort of fat we eat. Sorry this is my mid day dream…
Have you tried reading George Jelinek’s book, Taking control of Multiple Sclerosis?
I have and I follow the diet. It’s just that I wish there was some actual contemporary research done into it… I would love to take part in such research. There are a few lines in the book were jelinek says he had a chance to look at the fatty acid profile of the cells of some people who have ms and he says that even those on the diet tend to preferentially incorporate saturated fat into their cells and not good fat. I would like my fatty acid profile checked and followed… I would like to eventually get off dmds and control ms with diet only. In my dreams of course… Not as long as pharmasutical companies fund all the serious research.
You are correct this would be valuble especially to us people who realise how important diet is. I tried the Jelinek diet and after a year had another bad relapse, so went on to Betaferon; I still try and stay on a low fat diet with fish and very little meat or cheese and bread, as it helps keep my weight down but Jelinek’s diet was a difficult one to keep to strictly, the worse place to try and keep to this kind of diet is at MS support meetings, as no one else was interested in diet and I became a sort of freak! no chage there then!
Like you I would like to see scientific studies on diet, especially as Scananavian countries have less MS than they should with the low sunlight they have, apparently caused by their high vitamin D diets, I’m guessing this is in fact fish.
Wendy
x
Dr Mecola put a long article up about this and other things today
This was all very interesting. I have heard of a diet with lots of vitamin B or supplements. Can’t see many people trying this diet though unless we are willing to spend all of our time studying health foods and buying things such as seaweed. The anti toxant theories may have something to them as my daughter’s friend (who is an Osteopath) has advised me that cutting out caffeine and drinking teas such as Rooiboss would be a good thing for me.
Wendy
x
Hello,
If MS turns out to be a non auto-immune disease. Then why aren’t the medics collecting data right this second on this other theory?
Let me explain - We all know that we have the usual tests done right before the diagnosis. However, even when medics long suspect what is wrong with us to be MS. They do not usually follow up on the tests done until something substantial changes again.
Maybe ( I am no medic btw), if they suspect MS then surely they could perhaps try things such as recurrent MRI’s for example? My way of thinking is if they can see the actual damadge caused by the obliteration of Myelin. Then surely a detailed account of how it is being destroyed and over what time period etc might have some weight to it?
As, right now its all about ‘bolting the door after horse gone’ really where MRI’s are concerned. Far as I know anyway?
Tried to make this make sense and hope I did guys.
Just a thought anyway
tc
Anna x
Hiya,
I just find it incredibly irritating that all the NHS can do is give you the DMDs - when I was first diagnosed (after years of asking if I had MS) I asked if there was anything I could do for myself, eg diet, exercise, alternative therapies, etc. But I was told by the neurologist and the ms nurse that there was nothing apart from the DMDs. So, like a lot of others in this situation, I did my own research and found my own “straws” to clutch at - I was at a slight advantage having seen what my mum did, so I knew where to start looking. I realise that the NHS cannot recommend anything apart from what has been researched, but why is the research not being done, and why can’t they say something like “we can’t recommend this, but other people with MS have tried…”. It’s ridiculous that you’re given a devastating diagnosis and then left to get on with things yourself.
Luisa x
I couldn’t agree more. But then, having seen the aggressive responses that leap out if ever a modification to diet - like cutting out chocolate ;>) - is suggested, I can almost understand why medical professionals don’t suggest lifestyle changes.
Food is plentiful in the Western world and an emotive subject for all the wrong reasons.
People do it when they have life-threatening conditions, so those with lifestyle-threatening conditions ought to be persuaded to do the same.
But I also take the point that what works for one doesn’t necessarily work for another - and there’s the get-out that convinces folk it’s not worth trying, sigh.
The “proof” of Swank’s regime (now modified by Jelinek) seems to be sound enough to start eating healthily, at least.
A balanced diet that’s low in saturated fat seems to be the way to go. I’m SO glad I switched 13 years ago; goodness knows what sort of state I’d be in now if I’d carried on going (downhill) as I had been.
Merry Christmas - have another herring with your sprouts!
Lolli xx
We should make a point of having a get together next year…share the jalopenos.
x
Ooh, you mean you’ll order something horribly unhealthy and let me nick bits off your plate? Deal!
Lolli xx
Thank you Lolli. It helps so much to know that I am not the only crazy person attempting this diet. It is so difficult to stick to because people just don’t understand why I do it. That’s party why I want research to be done. To be able to say - this is why.
I find that the Jelinek advice works for me - I don’t stick religiously to it, but I definitely don’t eat red meat any more, if I attempt red meat of any sort, my energy levels are wiped out for about a week. I don’t really care what anyone else thinks, I know this works for me and it’s fairly simple to do.
L x
My mum had R/arthritis and I was told by an MS research Professor that my genetic link would probalby come from this, as it is also auto immune disease I believe that this is likely.
Although diet is very important for everyone (MS or not), MS diets don’t work for everyone and some of us have had good success on DMDs. Not that I have given up with diet but am not willing to risk coming off of Betaferon; as for me it works.
Wendy
x