Nutrition, vitamins and herbs

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lifeisbutavapor

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I have been diagnosed with ALS this month (March, 2013) by 3 different neurologist. It started out about 7 months ago with a weakness in my right hand. I am trying to stay positive, because I believe that's the most important thing. Without going through my life story, I simply want to know from pals, what food, vitamins and/or herbs have you found to be effective in your battle with ALS. Also the neuro told me to rest, not excercise, what do you think? Thanks in advance for your imput.

PS--at this point I am on Rilutek (twice a day) and B12 shot (monthly) and I take a multivitamin/multimineral everyday.
 

Ms. Pie

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I occasionally take coconut oil but that's it. Many here can tell you about supplements
 

Ms. Pie

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My comment went to moderation. I only use coconut oil.
 

ottawa girl

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Sorry you had to find us. I take nothing in terms of supplements, except for vitamin D in the winter months. I think I'm getting all of the vitamins and minerals my body requires because my diet is generally healthy and includes lots if fruits and vegetables. The only exercise I do are mild stretches as recommended by Physio and which help ease the spasms.

I started Wellbutrin in December and I believe I have more energy most days and require fewer daytime naps. I take one 300mg Neurontin at night.

Hope this us helpful!
 

Karvorka

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Save your money, which is what my neurologist said to me about 5 years ago but me being me didn't listen ;) Over $25 grand later I should've listened .. Vitamins and supplements do nothing I've tried about everything, spend the money on ABSOLUTELY gorging yourself on whatever floats your boat, food, travel, sex whatever.
 

Nighthawk

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I know those supplementation will not cure MND but, they don't do any harm either.
 

HelenL

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lifeisbutavapor, sorry that you had to find us here in the forum but welcome nonetheless.

People take a variety of different supplements but the ones that most seem to think helped a bit are: creatine, CoQ10, vitamin D and coconut oil. There are many other supplements and you can check them out but I would recommend checking into these four to start with. make sure that the creatine that you buy is not the cheap stuff, but has the Creapure® on the label, to ensure it's not all fillers. The coconut oil should be cold expressed to retain its nutrients and you can massage with it, and also put it in your food. I find it good on toast or hot chocolate, and grilled cheese sandwiches. Use it instead of butter in it will be a solid at room temperature but melt in your hands. Do not take too much of this at first are you will find yourself on the toilet! Believe me I did!

The CoQ10 and vitamin D I started off at higher doses and lowered it to what felt comfortable for me. I would recommend buying the ubiquinal CoQ10 as it is said to be absorbed better than the regular version. I use the vitamin D and noticed less twitches but everybody is different.

Good luck and if you have any questions just ask away!

Helen
 

Cricket

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I would suggest checking in with a physio with lots of als knowledge regarding exercising. As for the rest, i remember wanting to change my diet to become vegan or to do this or that. Then I quickly realized that pALS before me have tried and als was still stubborn. So my conclusions are to do whatever makes you feel good and to keep the digestive track happy with lots of fruits and veggies. I second what everyone said earlier and like karvorka says - spend wisely, indulge and enjoy life!
 

lifeisbutavapor

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Helen, may sound like a dumb question, but where exactly do you buy coconut oil? I can't recall seeing it at the grocery store, but then again I have never looked...Thanks
 

Pumpie

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I've tried a heap if vitamins no change yet which I regard as a good thing.
But there are some homeopathic stuffs that my dad has started especially to deal with FTD, apparently it takes 30-40 days to kick in , we are still waiting - will keep you updated !
 

Cricket

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I would try a health food store for the coconut oil
 
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