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Old 08-06-2005, 02:30 PM   #1
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What to avoid ?

I have only had MS for about 6 mos. I am alittle worried that I might be at the begining of my next attach. I' wondering what everyone's opinion is on what can make MS worse.I've done alot of reading on the disease, and I know hot tubs are a bad idea, but what else? If it's an immune system problem, should we stay away from things like antioxidents or ecinasia(sp)? Stuff that is suppose to boost your immune system. Please let me know if you have any thoughts.

Last edited by Katie M; 08-06-2005 at 02:30 PM.

 
Old 08-07-2005, 07:57 PM   #2
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Re: What to avoid ?

What does your neurologist think?

Hot tubs (or heat in general) bring on fatigue and can make existing symptoms (such as balance problems) worse ... but that is all short lived. Once you cool down, you're back to the same stage you were at before you got over-heated.

My dh has MS and he's been told to "be as healthy as possible", so that other things don't complicate the MS. Since anti-oxidants occur naturally in some foods, I don't see how those can hurt. I've read both good and not-so-good things about echineciea in general, so don't know what it would do for ms patients.

We found that the best thing was not to be complacent, not to accept treatment and advice from just any medical professional but to find a neurologist who specializes in MS or get involved with an "MS Center" that seem to be popping up at many reputable hospitals. My husband's first years after diagnosis were not horrible ... but they weren't "well-managed" either, if that makes sense.

I'm sorry I can't answer your questions directly and hope you will find the answers you are looking for. I wish you the best.

 
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Old 08-08-2005, 04:37 AM   #3
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Re: What to avoid ?

Avoiding extremes of heat and cold and STRESS -- these are the main ones for me. Some MSers change their diet, take tons of supplements -- none of that has been so successful for me except maybe the B Complex? The "authorities" on MS (doctors, specialists, etc.) don't really KNOW what works and doesn't work because MS itself is a big unknown-- they don't know WHY it happens, so the treatment is difficult. I have given up taking my Avonex not only because of the cost, but because the side effects were becoming so intolerable (ie, if my quality of life is going downhill anyway, why should I waste 40% of my present time/my LIFE!/ with a drug that may or may not help prevent a future exacerbation and does NOTHING for my current symptoms?). The drugs are all experimental anyway, in my opinion!

So, we're all in the dark here, I think. It's all "trial and error" and paying attention to YOUR body -- everyone is different with this disease.

 
Old 08-08-2005, 08:25 AM   #4
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Re: What to avoid ?

hi kelly.
unfortunately, there is nothing you can do. that is one of the most frustrating things about the disease - especially for a control freak like me! that was the hardest thing to accept. it's not up to you. you can't make it better.
on the other hand, you can't make it worse either. that thought is rather freeing, if you look at it the right way. your body is a machine, and it is the only real possession you have. take good care of it. be kind to it. make it work for you.
it will disobey at times, and you just have to accept that. when you come to peace with the fact that it is not within your control, you are free to focus on other things.
i'm short, and i can't do anything about that either. so, i do the best with what i have. i shop in the petite section.
i don't mean to trivialize, but if you don't put this whole thing into perspective, it can really drive you insane.
my neuro told me to avoid extreme heat and all the immuno-boosting stuff like zinc and echinacea. that, and maintain your general health. but, they can't get more specific because your behavior has very little impact on the disease. just pay attention to yourself. if you do something, and it makes you feel worse, stop doing it. if you do something, and it makes you feel great, then do it again.

 
Old 08-08-2005, 09:00 AM   #5
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Re: What to avoid ?

I have read alcohol causes symptoms to get worse... I love wine... any thoughts?

 
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