Overcoming MS

[yousyous8]

Hello everyone,

I hope you are all doing well.

I have a question regarding a certain program found on a book and internet : overcoming Multiple Sclerosis (I'm not trying to promote anything). I'm just curious. How effective is this program. It states obvious things we all should follow and respect in order to be healthy. But I know that in our modern times, it's hard to live by the book.

Did you follow the program? Did it help? Was it effective?

Thank you very much for your input :)

[supermum_ms]

hmmmm lot's and lots of chocolate cake always makes me feel good, though i've heard from the non believers, that chocolate isn't good for you........no way, it totally is! :D

Good idea, it's always best to make sure to look after your self, and keep the worrying to a minimum, so you have the inner strength to help out if and when your needed...... oh and having a good sense of humour, I think actually helps everyone involved, so don't forget the hugs and laughs!

Cheers.........JJ

[karryon55]

Hi there YY,

It sounds like you are feeling less anxious about your sisters situation & you are coming across as calmer. That's good to hear & I'm genuinely pleased to hear this.

I think you have a great plan of action from what you have written. You are very wise to have listened to the signals your body is giving you from too much stress. It often takes us to get it this point to see what stress can do to us. I wish you & your sister the best. Please keep us updated with how things are going.

Take care,
Karry.

[yousyous8]

Hey Supermum. Thank you for your nice reply. And I do agree with everything you've said.

I must say, my sister right now is still in the denial phase. I'm trying hard to learn everything I can about the disease and be prepared when reality kicks in. I really reaally hope that with a good neuro and the right treatment, she'll be able to "tame the beast". I do not believe that diet alone or exercise alone or meditation alone can stop or slow the progression. What I do believe however is what we eat and the way we live can help achieve a better life quality. That is my hope at least.

Like you've said, this isn't about me. And it will be her choices and decisions that will affect her life, but I won't be far behind her!

I'm trying to stay away from the internet a little. I realise it's not healthy to over-worry and my body started giving me alarm signals. So I'll take it easy from now on, stay informed and be supportive.

Guys, thank you so much for your help. You're all wonderful.

Best wishes!

[supermum_ms]

Hi there,

Firstly, i'd like to send you a big hug, for being such a great sister! Not many people take the time to learn and truly understand medical conditions, that they personally are not dx and living........so well done you! :D

Unfortunately, MS is one of the medical conditions, that seems to have a huge collection of myths, misinformation and a plethora of 'cures' that can make the understanding, that much harder. MS is already complicated, with enough to get your head around, with out also having to wade through these as well.

We've probably all experienced family, friends and total strangers offering their 'understanding' of what we should or shouldn't be doing, and whilst their intention is admittedly to be helpful, people often fail to take into account, the potential negativity that advice can have on the receiver. Psychologically, advice good or bad, is 'unconsciously' more about them selves, than the person they are imparting their advice to. It makes people feel better, to feel like they are helping but more often than not, simply listening and having some knowledge of the topic, is a lot more helpful than constantly receiving unsolicited advice.

MS research has not found any corroborating evidence that any 'MS' diet, will positively influence the disease its self, but i'm a believer in the science, so what's subjective to me are the anecdotal claims, that the diet's do affect disease progression. I'm a parent of children with special dietary needs, and seriously the last decade has not been simple or an easy thing to do at all, and that's not been half as restrictive as the MS diets going around, I was very open minded but honestly the MS diets, just don't stack up to what's being claimed imho.
  
"But you're right. Each and everyone of us is different and everyone should find what makes him feel good. " keep that thought in mind with all that your discovering about MS, I can't commend you more for learning about her disease but it is your sister's life and her individual choices to make, some you may not agree with but she's the driver in this, so please don't forget to listen to her and be her number 1 supporter for what ever it is she decides she needs!

Cheers..........JJ
  

[Poppy7402]

The main idea behind lots of these 'overcoming MS' things is changing one's diet but check out the bottom of the third introductory paragraph in this article for another 'theory'.  If this one is 'the' correct theory, then changing one's diet after diagnosis is akin to shutting the door after the horse has bolted.

http://www.hindawi.com/crim/immunology/2013/248482/

The people who purport to have a 'cure' for MS are saying that they have achieved what some of the best minds in the world haven't been able to do.  I have to ask whether they were even correctly diagnosed with MS in the first place if they think they've been able to cure it with diet alone.    

Poppy

[yousyous8]

You're right. But I am getting better at this. I'm trying to be positive. I'm only checking "official" websites and scientific ones.

I think it helps to know that if something goes wrong with a drug, one can try another one. It's amazing how science keeps evolving.
But to get back to the initial subject, many scientific articles link exercise with a good life quality, especially for people who suffer from MS.

Also, it must be hard to scientifically prove how diet affects the progression of the disease as it's extremely subjective. How many truly follow the program and for how long...

But you're right. Each and everyone of us is different and everyone should find what makes him feel good.

Thanks guys for your input. :)

[essdipity]

I certainly have had various side effects, and had to switch from Copaxone because of them. This was *not* terrifying, especially because I knew there were other choices. Not everyone reacts well to everything, but so what?

Why do you continue to read and internalize all this stuff? How is that helping your sister or you?

As so many here have advised you, read good, reputable sites if you're going to read anything more, which probably isn't necessary or wise at this point. You will not find anything on the MS society web sites of any country that call any side effects terrifying.

[SarahL2491]

I so agree with Kyle on the side effects!

[kwarendorf]

As to "terrifying" side effects, don't believe everything you read. Not everyone experiences side effects. And I suspect that those who do would not qualify them as terrifying.

I have taken many drugs in association with MS and I can't think of a single side effect I have experienced.

Kyle

[SarahL2491]

I will first tell you that working on our health thru good eating cannot hurt us.  BUT the bottom line is that MS is a Central Nervous System Disease and is incurable.  All we can do is take meds to help with the symptoms and DMD drugs to help hold off as many relapses as possible.

Everyone writing these books are trying to make money and when you buy them, they are succeeding.  IF there was a magic cure suddenly, you would hear our very own MS National Society AND your neuro screaming it from the roof tops!

Relax, if working with your food intake or exercise makes you feel better, then go with it.  Some are physically capable of those things and some are not.  I would love to go veggie but my food budget or transportation budget to get to town doesn't allow it.  I ignore the multi vitamin ads because they've proven they do nothing for us (I've been saying that for years silently) and of course, emotional peace, however you obtain it, cannot hurt but always help.

Sarah

[yousyous8]

Thanks you both for your replies. I am not one to tell people what to do and my sister is extremely stuborn. Nevertheless, if I were sick, I would have done anything in my power to be or at least feel in control. Cutting off meat won't be difficult. Cutting off saturated fats found in products such as chips etc. and maybe eat less cheese and more fruits and vegetables is not a huge sacrifice. Of course, this only is not enough and getting proper treatment is essential (from what I've read) even though the side effects sound pretty terrifying.

After these 2 weeks, I'm doing a better job at accepting this and getting ready for whatever might come. I also have faith :)

Thanks guys!

[kwarendorf]

I am a big believer in doing everything possible to fight MS. For me that means eating well and exercising. The stronger my body is, the better it will be able to fight against MS.

There are many diets/plans/strategies that claim all kinds of fantabulous success in the treatment/curing of MS. Invariably these do not stand up to scientific scrutiny.

It is my opinion that any or all of these should be pursued on top of traditional disease modifying therapies such as Avonex, Betaseron Rebif, Copaxone, Tysabri, Tecfidera etc.

Kyle

[essdipity]

Assuming your sister finds a good MS neuro, she should follow his or her advice, including advice about lifestyle and diet (if any--lots of neuros don't even mention this part).

It's a good idea for everyone, MS or not, to eat a good, healthy diet, exercise regularly, and so on. It is unlikely that your sister will be told to cut out meat, because there is no evidence this will help. Otherwise, nearly all of us here would be vegetarians.

Please don't urge your sister to do or not do anything or to follow anyone's 'plan.' For her, that would be like having various people tell her how to raise a baby. The one she needs to listen to is her doctor.

ess

[yousyous8]

Thank you both for your replies.

Someone working at the Multiple Scelerosis Society (in canada) has advised my sister to cut off meat except fish and eat lots of vegetables and fruits. Also to take supplements (Vitamin D, B6 and B12) and to exercise as much as possible. He also said it is very important she sees a neuro soon and decide what treatment she should follow.

I'm sure the program alone can't do miracles, but associated with proper treatment, it should help.

[immisceo]

Eating in a healthy manner is good for all of us, MS or not as you say. However, there is little objective data as to the efficacy of such a programme (or indeed any of the *many* diets/protocols promoted towards the MS community).

I read this book soon after my diagnosis and found it's argument insufficient to merit changing my diet in such an extreme fashion. Ironically, I essentially had this diet for years prior to being diagnosed. Didn't stop me from getting MS, now did it? (vegetarian from age 13, vegan from ages 25-29).

As Tammy said, good diet is advised to make sure we're in tip-top shape otherwise and to aid in symptom management. Actually influencing disease course? That's still in the "theoretical" section.

[maxthecat43]

Hi there. My mother tried to get me "cured" with diet, and exercise programs.  They promise the sun, moon, and stars...  but I don't personally know anyone they have worked for.  

The MS team that works with me does advocate dietary changes and exercises.  However, its mainly for symptom management.

Good luck.  Sorry I couldn't be of more help.

Tammy