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new member-my symptom management

PostPosted: August 15th, 2003, 10:31 am
by marieclare
I stumbled on this forum after six years of dealing with BFS---My experiences are so similar to everyone else's here--especially Aarons...it actually makes me feel so much better to know I am not the only one!! Anyway--I wont go into detail about my experiences but after 5 years of not seeing any more doctors--the first year i saw everyone and had all tests done!!--i found a holistic neurologist who is just fantastic---she has suggested yoga 9 I am doing it and it is great), meditation, relaxation tapes, nutrtional counseling ( I am a vegetarain)--Anyway--she also suggested I take the supplement Taurine--it is an amino acid--research it--it has great benefits--I have been on it for two weeks now and I think i am niticing some improvements---I will be very cautious in saying this as I have tried everything!!! I will not take meds as i tried that in the first year and it was disasterous!!!!! Anyway--just wanted o mention the Taurine..........I am so tired of letting this BFS rule my life--I am fighting back and this forum helps so much!!!

PostPosted: August 15th, 2003, 1:40 pm
by Jenn311
Hey Marieclare...

Thanks for the info....it's great to hear about anything new we can try. There are some drinks ( http://www.sobebev.com ) you can buy at grocery stores and if not there, health food stores that have Taurine in them. And they are muy delicioso! I used to drink them when I had a job. I never realized that Taurine could help the twitches...

Welcome to the forum :lol: !

Jen

jen

PostPosted: August 15th, 2003, 5:31 pm
by marieclare
I did see those drinks with taurine in them--they just have alot of sugar --My neuro--my best friend now!!--says that anyone with BFS should watch their sugar intake---this whole syndrome is so ridiculous--i used to be so normal!!!

PostPosted: August 15th, 2003, 9:25 pm
by Jenn311
Wow,

I've never heard that one either. What effect does sugar have on BFS? I know it's bad for the body in general, But it's actually one of the main consituents of my diet presently. (Sad...I know.)

Jen

PostPosted: August 15th, 2003, 10:56 pm
by Brian_B
well Jenn, consider that caffeine also has an effect on BFS right? most likely because it is in essence a stimulant. Sugar would also fall under that same category.

like you though I would have a hard time giving up sugar because I like soda and candy too much.

PostPosted: August 16th, 2003, 9:53 am
by tlotoxl
i could be off on this one, but i certainly wouldn't replace sugar with nutrasweet or othe artificial sweetners; sugar may not be good for us, but nutrasweet is probably actually bad for the brain and the rest of the other articial sweetners are still largely untested.

PostPosted: August 16th, 2003, 7:02 pm
by marieclare
Sugar IS a stimulant--i have cut back drastically as I LOVE it---I also heard that aspertame/nutrasweet is also NOT good for anyone let alone BFS people---I have given it all up--caffeine (including chocolate), aspertame , alcohol etc. So.....i know I am probably hoping too much but the Taurine SEEMS to still be helping me---twitching IS less and I feel a little calmer...although my toe twitched and i almost became NOT calm for a second....... I go back to my neuro in six weeks so she can see if Taurine worked (and other lifestyle changes) and to get more advice!! I will beat this.

PostPosted: August 17th, 2003, 8:55 am
by DanielDK
Chocolate, candy, Snickers, Oreo´s, Coca-Cola, Fanta, danish pastry, Cake, Pancakes, Waffles, ice cream, Syrup, Brownies, Ben & Jerry´s Chocolate Chunk.....

DO WE REALLY WANT TO BE WITHOUT SUGAR?????????!!!!!!!!

Haha......hugs from Daniel.

PostPosted: August 17th, 2003, 3:44 pm
by marieclare
Let me see---sugar or twitching really bad---not a choice for me--I'll cut way back on sugar and see what happens!!! or maybe I should just dorwn my sorrows in sugar!!!!