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ladave

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Replying to various questions-

Symptoms started sometime in 2003 with fasciculations, then weakness in right hand.

My "secret" is probably that I just have something of a slow case. I just learned I have ALS two months ago, up until then I had horrible eating habits and drank lots of aspartame-spiked drinks. I've made major changes since then, who knows really if they are doing any good. Here's what I'm doing-

Diet- no soft drinks; trying to eat as organically as possible.

Rilutek, 50 mg. twice daily.

Physiotherapy- leg and upper body strengthening exercises (still lots of muscles there), range of motion in my hands.

Supplements:

EGCG Green Tea Extract- this has moved to the top of my list. ALSTDF is so intrigued they are going to study it: http://www.als.net/forum/topic.asp?TOPIC_ID=550
I'm increasing from 600 to 1200 mg
COQ10- increasing to 1000 mg
R-ALA- 600 mg
Acetyl-l-carnatine- 3 grams
Creatine- 4 grams
Milk Thistle- 900 mg
OPC- 200 mg
zinc- 30 mg
b-100- 2 time release pills
c- 2 time release capsules
3-6-9 omega fatty acids- 6 capsules
centrophenoxine- 500 mg
methyl b-12 sublingual- 25 mg

These are daily amounts taken in divided doses.

Clay foot baths for detox once a week.

I take long walks daily with my dog and go dancing twice a week. I try to maintain a positive attitude and not think about that 3-5 year number. If any of this is helping I have no idea.
 
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Question about aspartame

ladave, I know diet is a suspect in the search for the cause of ALS. Have you read specifically about aspartame as a possible ALS inducer, or did your doc talk with you about it.

My 70-year-old mom was recently diagnosed and, while her diet has always been very healthy, diet soft drinks have always been her beverage of choice.
 
Jane,

I do not know if there is any validity to the claims made against aspartame, particularly as regards ALS. However, I did consume massive quantities of diet sodas over many years, and have now stopped all aspartame consumption. It was one of those things that was relatively easy and painless, and whether or not it will affect my disease progression, I'm sure the fruit juices I'm drinking instead are more healthy in a general sense anyway.
 
I've probably only ever drank 6 diet drinks in my life. Just hated the taste. So for me that theory goes out the window.
 
Diet Soda

Me too i have only drank about 8 to 10 of them ever. but my mom who is 76 years old and does not have als slams those diet cokes about 6 aday so. :)


Kim
 
My sister, Kathy, used to drink a lot of Diet Coke each day. Her yoga instructor advised her to go off it long before her ALS diagnosis. I'm not sure what her doctor had to say about it, though. I, too, am/was a Diet Coke fanatic...now I'm trying to just do unsweetened iced tea for my caffeine needs. I figure...why chance it?!?!

Marcia
 
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