Nac

Has anyone heard about or take NAC? NAC is the Sulfhydryl compound N-Acetylcyteine, which is an amino acid and has proven to be one of the most powerful antioxidants. You take it along with Vitamin E, Vitamin B-2, Selenium and Magnesium ( you can get all 4 Vitamins and Minerals in a Centrum Vitatab ). You also take CoQ10 150 mg 2 x daily. The dose of NAC, which you can buy over the counter or online, is 3 grams up to 6 grams. I've read this may be helpful for people with ataxia. Does anyone have any information or an opinion about all this?

I thought I was but when I looked at the pack it was in fact alpha lipoic acid.

http://www.naturesbest.co.uk/alpha-lipoic-acid-250mg-p563/

which I got from Natures Best as free trial pack along with months supply of vits and mins multi.

I take lots more supplements too.

Who can say if it is doing any good. My ataxia was 'triggered' in my late 50's and I am 70 this year.

I like to think that my symptoms are relatively mild due to healthy life style, exercise, vits and mins.

My Co-Q10 have been prescribed but we moved home in early May and new GP has refused to put them on my repeat prescription.

Patsy

i took nac for about 2 yrs. i went off it recently. i think you should try it see if it does anything. i went off it because my doc put me on rilutec and i didn't want to mix. i can't say if it did anything for me.

lorraine

So why try it? I cant see the point in all these things. I am persevering with the supplements I have but I am going to cut down in future and see what happens.

I do wii fit exercises most mornings so can tell if I am deteriorating.

Patsy

I may want to try it to see if it helps my ataxia Patsy. I have to be my own patient advocate and do whatever I can to see what helps and what doesn't. Everyone is different with different challenges and reasons for ataxia. What works for one person may not work for someone else. Obviously, there is no cure yet for ataxia but I'll NEVER give up or give into it as long as I'm still breathing. Maybe I'm grasping at straws, but I'm programmed and determined to keep grasping...

I quite agree Rose - if you can find something that relieves symptoms in anyway, that's great.

We are indeed all different and particular age - we all deteriorate with age so some symptoms would appear to be age related - however with ataxia, they are harder to deal with.

there are so many 'new' supplements to try, it can be quite overwhelming.

If you have MS or other more well known diseases, you seem to get regular monitoring and help to manage your condition but with ataxia this doesnt seem to be the case. I am just told to contact them if I need help!!

Patsy

I was diagnosed with cerebellar degenerative disorder in March 2011, which was changed to M.S.A.in March 2012, and I am just about to take my first CoQ10 but only in 30mg dose. I would appreciate and try anything if anybody has any suggestions.

Hi Lindilu

I take 300 mg of CoQ10 daily, but originally started taking it due to achy muscles from taking a statin drug for high cholesteral per my cardiologist. I think it also helps my ataxia as my muscles aren't as sore now. Anyway, I asked my neurologist about taking it and he said it can't hurt, although there's no proof that it works for ataxia. I've been taking it for several years now. I was diagnosed with sporatic cerebellar ataxia 8 years ago. Hope it helps you, although you may want to ask your physician about the dosage. I've read on this blog that some people with ataxia take 150 mg 2 x daily which is a good idea to divide the dose up...Rose

I was told by my neurologist that unless you have a deficiency of CO-Q10 anything over 30mg per day will be wasted.

No harm but wasted of money.

Patsy

That's interesting Patsy....I had no idea that unless you're deficient in CoQ10 anything over 30 mg is wasted! I wonder why my cardiologist told me to take 300 mg daily? I'll have to ask at my next appointment...Thanks for the info. Patsy....

That information was from my neurologist via her nurse, at the Accredited Ataxia Centre in London.

I agree that everyone should take advice from their own professional . although would seem that if you consult more than one professional you may still get conflicting advice. :(

Patsy x

I agree, there's a lot of conflicting information out there...sometimes you just have to do the "trial & error" thing for yourself...ha!