Forum

The problem with 'game changing' treatments

I have read a lot of threads on this forum over the past couple of years. Most of them I think are upbeat and full of hope for the future. Like everyone I reckon it’s good to have place to come where you can whinge and/or celebrate without judgement.

There are also a lot of threads along the lines of “vegan diet/vegetarian diet - Game changer”. Some extolling the virtues of different kinds of diet to help with the symptoms. Some recommending different types of treatment etc etc. I understand all of these and it makes me very happy to think that some changes in lifestyle can help some people feel so much better.

However - I find myself being very sceptical when I read all of these. I’m not saying at all that people should not try these if they feel the need - each to their own. I do wonder though if the disease in all these people would still have improved at that particular time whether or not they had changed their lifestyle. I have seen a post on facebook from a woman who has lived almost symptom free for many years and is quite possibly making a pretty penny from ‘selling’ her lifestyle to those of us who want to give it a go.

Here’s the rub. I lived symptom free for about 35 years. I didn’t change anything about my lifestyle. I forgot I was supposed to have the disease to be honest. I can’t patent my approach and encourage others to live the way I did because nothing about my lifestyle changed. I was just very VERY lucky.

I am SO pleased for anyone who feels that the changes they have made are contributing to a better outcome for them, but for those who try anything and everything to make a difference to this disease that it doesn’t work for - it can only contribute to a sense of failure and I for one already felt that when I was diagnosed.

What works for one will not necessarily work for another. Try things if you wish, but encouraging other people to do what you did because it worked for you may not be the best way to go. I’m not about to start changing my lifestyle beyond what has changed already. I love my food and I will continue to love everything that passes my lips because life is already too damn short to start cutting out the things I love.

Are these diets/supplements etc etc going to make a difference - we will never know I guess - MS is a sneaky little bugger and i’m of the opinion that it will do what it wants, when it wants and it sticks two fingers up to all of us all the time.

Live your life the way you want to and be as happy as you can be is my philosophy.

THE END

5 Likes

Well said! When I’ve read about people “curing their MS by diet, supplements, reflexology, hypnotherapy, witchcraft or other miracle, I wonder if they’ve simply gone naturally and fortunately for them into remission. I’m not opposed to alternatives, I’ve even tried some, as conventional medicine and neurologists have nothing to offer me. It does sometimes appear that these people are peddling false hope for those like me who continue to deteriorate.

2 Likes

Very well said Jules. And very apposite given the latest discussion about stem cell treatments: the latest ‘Miracle Cure’!

I completely agree, MS is indeed a sneaky bugger. And will do what it likes, when it likes.

If individuals have found a particular lifestyle / diet / treatment that seems to suit them, and which they consider has been beneficial, then hooray for them.

Me, I remain sceptical. Many DMDs do a marvellous job for those with RRMS who can tolerate the side effects. But for those of us with progressive / advanced MS, we are still waiting for effective treatment. And sadly, I doubt that much will ever be possible to put right the damage already done to our bodies. So I hold out no hope personally.

That is not to say I accept the bloody disease, I don’t, and I never will. But neither will I fight with something that essentially I stand no chance of beating. All I can do is compromise with it. And save my energy for things I want to do rather than fighting a lost battle.

Sue

1 Like

The word that springs to mind with a lot of these “miracle cures” and “game changers” is placebo. Maybe these things truly work for a few people, maybe they just seem to work. As has been said, MS is sneaky. It’s possible that it went into a prolonged period of remission that coincided with whatever lifestyle change was made. With some of the lifestyle changes, it’s possible that dietary and other issues were exacerbating problems rather than causing them.

The people I have problems with are the ones who publicize, or even try to make money from, their cure/treatment/lifestyle change as the next big thing that everyone should be doing, complete with justification for why it works, but minus any real evidence to back their claims… Sometimes digging deeper shows that it’s not the miracle they claim it is, or that the justification is flawed, if not completely bogus. As far as I’m concerned, people can make whatever lifestyle changes they want to. I just don’t want to hear about it unless they have solid evidence to show that it works long term for more than just a few people.

PS: I’ve heard a lot about HSCT as a wonder cure. I’m not disputing its effectiveness for those who have had it. But it won’t be any good for the majority of us till it’s available free of charge on the NHS. I can’t afford it and I’m sure I’m not the only one.

bravo jules!

ellie

1 Like

HSCT is available on the NHS, but the criteria is quite strict. Multiple Sclerosis Research: #CaseStudy: Are you eligible for HSCT in London?

I didn’t know it was available at all on the NHS. However, the article does say that the treatment hasn’t been given the green light by NICE or NHS England so, as far as I’m concerned, that means it isn’t freely available. It’s not a treatment most pwMS will have access to, any way.

A defence of the delusion.

I am guilty on all charges as I

Follow a vegan diet

Self medicate with Biotin and CBD paste

Take high dosage of Vitamin D3 (not controversial, of course)

Eat and drink fermented products

Exercise daily (mainly Pilates type)

I am able to report significant changes to the progression of my MS symptoms. Yes, it is quite feasible that these may have occurred for other reasons such as retirement and the subsequent improvement in my wellbeing because of stress reduction and the requirement to follow someone else’s agenda, for instances.

Nevertheless I do defend my decision to take up this alternative approach simply on the following premise. I am merely attempting to take as much control as I can of the MS progression; and the resultant active, positive approach brings at least a psychological benefit, even if it could arguably be deemed as delusional.

In the words of the Sam Cooke song

‘You’ve got to accentuate the positive

Eliminate the negative

Latch on to the affirmative

But don’t mess with Mister Inbetween’

I agree that we are all entitled to our viewpoints and I am no apostle of mine. It just appears to work for me.

Peace and love to all.

Alun

3 Likes

For the record - I would never accuse anyone of being delusional and i’m most definitely NOT expecting anyone to defend their decisions. It’s a personal choice and i’m glad your choice is working for you.

1 Like

With RRMS, as in life (although not in the proverb!), I think it is a matter of looking after the pounds and letting the pennies look after themselves.

In other words pay attention to the important stuff first; get yourself on the DMD that gets the job done for you at minimum risk, do the boring things that - MS or not - we should all be doing about healthy eating and exercise. Those are the biggies. Those in place, you can try out other stuff to your heart’s content, and good luck…

As far as complementary stuff goes, I am a great fan of the placebo effect. I don’t care how wacky and unscientific a particular thing is: if it works for me, then it works, and that is good enough for me: I have no interest in taking the drains up on these things. But I feel strongly that I have the luxury of taking that view only because I have had a good go at getting the important stuff sorted first - Tysabri, gym visits, healthy eating and so on. As best I can, anyway.

As you say, though: each to his own.

Alison

1 Like

I would ask the OP if she is of the opinion that there is nothing she can do to have an impact on her m.s. Is her bottom line that like it or not, the type of m.s. we are ‘dealt’ is what we have got - we can not influence things.

HSCT is being offered on the nhs at Kings and Hammersmith hospitals in London as well as in Sheffield. The London multidisciplinary team (MDT) is now accepting patients with progressive forms of the disease too.

No i’m not of that opinion at all. I have RRMS which may or may not become SPMS in the future - who knows. However I do try to eat as healthily as I can and I exercise as and when I can. I’m taking a shed load of medication which helps me to control the symptoms that I have and it has taken quite some time to get to where I am now - which is a ‘fully functioning’ human being again. However I do not believe that anything I can do will stop me having RRMS, I just have to deal with problems as they present themselves.

1 Like

I feel much the same, although I no longer aspire to pass as ‘fully functioning’ except for the briefest of spells, to the least critical of observers and while sitting still where the light is most flattering. :slight_smile:

A

x

lol I have to admit alison that I used the term “fully functioning” fairly loosely as anyone who knows me will testify.

1 Like