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Aug 15, 2005

Has any one had any success with this supplement ? It is recomended by the MD clinic for PALS.
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My father takes 100mg CoQ10, we are hopeful.
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I take 120mg of CoQ10 and 400 mg Vit. E and 5mg of Creatin Monohydrate. Some people are taking much larger doses and no one has came on here and said it killed anyone so maybe it can't be too bad for your system. Once again I would have to say some things appear to work for some and for others it doesn't seem to make a difference at all. But then seeing as we are all different how do we know if anything is working at all? Do what you think is right for you at the time. Be informed first though.
Thankyou for your input. My nero has me on 300 mgs. I'm also taking selinium , B 12, and drinking alot of green tea. I have stopped tripping over my feet. However , is it mind over matter or is it working? only time will tell. For me zanax helps with cramping and some twitches. I have not been diagnosed yet but my nero says it can't hurt.
Think most of us shop at GNC or Costco. They seem to have most of what you need and are the most reasonable.
Coq10: We found that the Rexall Brand at Wal-Mart is the most reasonable: 200mg, 50 caps @ $26.95 or close to that. GNC has 30 caps at $32.95(and that's ON SALE).
Thanks for the info Tom - very interesting...but I note that the ingredients for Vitaline COQ10 are:

Other Ingredients: dextrates, fructose, silicon dioxide, partially hydrogenated vegetable oil, natural flavor, citric acid, and magnesium stearate

What the heck is the "natural flavour" - I am so paranoid about MSG now that I think that everyone is trying to sneak it in their products...

I will probably get some - but $200 a month?!?! ALS is going to bankrupt me...
Had a check up with Dr. Strong my ALS specialist the other day.

We talked about recommended dosage of CoQ10.

He mentioned that there has been studies showing how CoQ10 can lead to increased mitochondrial activity (which I believe is good).

He also mentioned that the amount of CoQ10 is not the rate limiting step in the process. Meaning, once you get the effect, there is no point taking more as there is another step in the process which will limit the effect.

He could not tell me specifically the dosage amount of the experiment, but he did not think it was an excessive amount. I plan to follow up on this point.

Does anyone know about this study? I'm taking about 300 mg day but have been stressed about whether I should increase the dosage. Would be good to know that it's is not worth the expense - don't think I could stand adding another $200 to my supplement budget every month.
Hi Dave.I've had fasciculations for 3 years and am still going. Try not to worry.
Al said:
Hi Dave.I've had fasciculations for 3 years and am still going. Try not to worry.

Thanks Al. I'm trying. It is still just 3 weeks since my diagnosed so my mental state is very fragile at the moment. I'm not really out of the shock/fear/depression stage yet. Am hoping that being proactive in determining my course of treatment (including the supplements) will help right my mental ship. The info out there on this disease is frightening and confusing ("average 3-5 years from diagnosed to death- but you can't tell me how my case will proceed?"). Am very glad I located this Board.
Yes I know it is hard. It seems so long ago since my diagnosed. in oct/03. Just try to stay focused and live for today. Tomorrow is another day and it gets easier to cope and accept as time goes by. Al.
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