I can't work out if I'm better or worse for doing exercise. Suspect more mobile. Trying yoga again after 3 year gap. Shocked at how much worse I am but now I'm more homebound it's something ironically there's more time for..here goes
So, if I may ask, would the 6 of you go for exercise, vit-d, low fat diet e.g. despite the lack of trials to prove its effect on MS. I mean if you had MS yourself ofcourse.I find this question interesting in the light of this article.http://msj.sagepub.com/content/19/2/143.full
Would I go for all of these - yes, I would. Even though there are no clinical trials of exercise/low fat diet etc in the context of MS, it is something that wouldn't do harm for any of us, even those without MS. Vitamin D - at the moment I keep meaning to take high dose supplementation, however if I am honest I forget the tablets more than I remember (*hangs head in shame*)... But I think if I had a CIS/MS dx then that would certainly provide the impetus for me to remember to take them more regularly. I totally agree with the sentiments in the article, I'm sure that many of us with an interest in MS/vD would do so!
I have been on a gluten, wheat and dairy free diet for the last 18 months. I wasn't tested for gluten and was not prepared to eat gluten again for six weeks to be tested. I think I must of always had a slight intollerance to gluten/wheat. My stomach used to bloat out quite a bit with it and I used to feel very tired at work after eating wheat bread for lunch. Like I could really do with 20 mins sleep under my desk. BMC Neurology published a study entitled “Prevalence of Celiac Disease in Multiple Sclerosis” CONCLUSIONS:An increased prevalence of CD in 8 of the 72 MS patients (11.1%) and also in their first-degree relatives (23/126 [32%]).
'Use it or lose it'. I have SPMS and already I have lost the ability to do so many things. So while I have got the ability it is obvious to use it. Recently I was hospitalised for a few days and suddenly exercise seemed to require more effort. Was I potentially going to loose some physical functionality because I had taken no exercise? One other point, I believe exercise helps to keep you mentally healthy.I am not too sure about the benefits of a low fat diet if you are already taking regular exercise.
I do low-impact aerobics with wrist and ankle weights. I believe that yes, you have to stay strong and as active as possible, but it also increases blood flow to the brain and the peripheral bits of the body. My hands are warm after 40 minutes of exercise. This must be a good thing? The CCSVI crowd are obsessed with blood flow to the brain and if you are still active and mobile, then exercise must help. Not that I want CCSVI treatment - ever. I have hypertension (MS caused this) and have to take 4 drugs to control it. The low fat diet issue like ANY diet is down to your metabolism. I have high triglycerides and I have a high risk of developing Type 2 diabetes, so I eat a low-carbohydrate diet - on the orders of my endocrinologist. Not, a high fat diet as such, but I don't shy away from saturated fats. Fasting does me good - but this is just me.I can't eat gluten as it makes my neuropathic pain unbearable. When I stopped eating gluten, I felt so much better and if I eat bread for more than a few days, the pain increases. This is how I deal with MY MS. It may just help someone else. It may not. That's MS for you.
I watched this video and was a bit disappointed that there wasn't a more vigorous discussion about it. This work has really promising research attached:'Effect of a residential retreat promoting lifestyle modifications on health-related quality of life in people with multiple sclerosis.' Pui-Ming Li, Jelinek et al, Quality in Primary Care 2010;18:379–89and:'Health-related quality of life outcomes at 1 and 5 yearsafter a residential retreat promoting lifestyle modificationfor people with multiple sclerosis' Neurol Sci. 2013 February; 34(2): 187–195.I would like to know what you think about it.
As long as Jelinek keeps flogging his books and retreats he can't be viewed as impartial. He got the money to do a trial about MS and lifestyle and now a year on nothing productive has come out of it. Basically it's the same as Terry Wahls - people who (supposedly) have MS and them cure themselves by eating vegetables.
I am sorry it was not exciting enough, I think the producer was trying to push us along after Jermeys toungue had got frayed from all the talking and we were running out of time. Many of these issues are emotive but have little hard evidence to support or refute, maybe if the people that were going to attend had turned up then it may have had a differnt slant. Maybe Prof g will comment on the papers that have just come out
Personally I have no real knowledge of this and so any comment I would make would be opinion based on lack of knowledge, which is not much use.
Anon 3.05. Results from the Jelinek study will be out sometime this year I belive. How many studies are done in such a short time?No researcher is really impartial, some less than others thou.
However, i do find studies like this interesting. http://www.ncbi.nlm.nih.gov/pubmed/22367222Thank you for the link Miranda. And really, if you dont want to pay the price for attending a retreat, even if the daily rate is no more than an average hotel room, buy the book for 10,82 pounds on amazon. You will get the exact same information out of it.
thanks guys! and even cheaper, all the info is up online for free, I think its a good resource, but it would be interesting to hear what Prof G thinks.
You got your wish, today Prof G comments on the paper you mention.
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