Boston Meeting - Part 3 Various questions & answers

[Guest guest]

I have read your notes with interest.

Do you remember whether by any chance anything was said about N-Acetyl-Cysteine (NAC) which I understand has been used with some success for several years by some people with SCA/ataxia following encouraging scientific reports?

Fred

"cblanger49" wrote:

>>

>>

Are nutritional supplements helpful in delaying or treating MSA?This was broken down by type:Vitamin E -- no helpCoenzymeQ10 -- Not sure. There is currently a study underway in Parkinsons' patients.Glutathione -- There is evidence that processing of glutathione does not work properly in Parkinsons' patients. However, glutathione given orally or by injection does not cross the blood/brain barrier, so "you could inject a gallon of it and it would have no effect."I'm sure I missed a lot of what was said, but I hope some of my notes are helpful to others. I wish you all could have been there!>>

>>

[Guest guest]

Fred,

No, I'm afraid that one was not discussed.

Carol & Rob

>

> >>

> >>

> Are nutritional supplements helpful in delaying or treating MSA?

>

> This was broken down by type:

>

> Vitamin E -- no help

>

> CoenzymeQ10 -- Not sure. There is currently a study underway in

> Parkinsons' patients.

>

> Glutathione -- There is evidence that processing of glutathione

does

> not work properly in Parkinsons' patients. However, glutathione

> given orally or by injection does not cross the blood/brain

barrier,

> so " you could inject a gallon of it and it would have no effect. "

>

> I'm sure I missed a lot of what was said, but I hope some of my

notes

> are helpful to others. I wish you all could have been there!

>

> >>

> >>

[Guest guest]

Hi Fred,

I used to be on the ataxia mailing list so I know a bit about NAC. It's

actually a precursor of glutathione and believed to have anti-oxidant

properties. Whether or not it actually helps ataxia patients has never been

tested in double-blind trials. There was a study done at the University of

Florida around 1994 but it was an open label study, not a double blind

study. This means that the placebo effect could very well have been at work

but this was not factored in. There are lots of anecdotal reports of

apparent minor improvements however. See:

http://www.fortnet.org/fapg/nac.htm

Note that most of the people on the ataxia list who take NAC and CoQ10 have

Friedreich's ataxia which is believed to be caused by a buildup of iron in

the mitochondria or cell powerhouse. This iron reacts with oxygen which

forms toxic free radicals...therefore there is reason to believe

anti-oxidants do have some benefit in mopping up these free radicals in

patients with Friedreich's ataxia.

The underlying cause of dominant hereditary cerebellar ataxia is much

different than Friedreich's ataxia but quite similar to the suspected

underlying cause of multiple system atrophy in that there is a buildup of

plaque or filamentous inclusions in brain cells. Whether or not

anti-oxidants can help with this remains to be seen. Researchers are

actually looking at other potential therapies right now... different

proteins which can offset the toxic effects of the filamentous inclusions.

It's sounding hopeful.

Did you get a copy of the MSA News for May 2002? It mentions two online

videos from the NIH which describe some of the new research with proteins

and the cause of neurodegeneration.

These articles from the MSA News for February 2001 might interest you as

well. Hopefully these links still work, I haven't checked:

1. Iron Metabolism and MSA

Iron Problems May Lead to Parkinson's: Mouse study shows direct link

January 30, 2001 article. Multiple System Atrophy and Olivopontocerebellar

atrophy mentioned.

http://www.healthscout.com/cgi-bin/WebObjects/Af?ap=43&id=107731

Mouse With Iron Disorder Offers Clues To Parkinson's, Similar Diseases

January 31, 2001 article. MSA and OPCA mentioned

http://ipn.intelihealth.com/IPN/ihtIPN?st=23883&t=7223&c=310191

-------------

2. Oxidative Stress and MSA

Oxidative Damage Linked Directly to Neurodegeneration

November 3, 2000 article. MSA is mentioned

http://www.grg.org/ParkO2Dam.htm

Evidence Links Protein Damage To Parkinson's

November 3, 2000 article - MSA and other synucleinopathies are included in

this article

http://www.sciencedaily.com/releases/2000/11/001103071439.htm

Oxidative Stress and Brain Disorders

This article gives some background on what oxidative or " free radical "

damage is.

http://www.sfn.org/briefings/oxidative.html

Take care,

Pam

Boston Meeting - Part 3 Various questions & answers

I have read your notes with interest.

Do you remember whether by any chance anything was said about

N-Acetyl-Cysteine (NAC) which I understand has been used with some success

for several years by some people with SCA/ataxia following encouraging

scientific reports?

Fred

" cblanger49 " carol.langer@...> wrote:

>>

>>

Are nutritional supplements helpful in delaying or treating MSA?

This was broken down by type:

Vitamin E -- no help

CoenzymeQ10 -- Not sure. There is currently a study underway in

Parkinsons' patients.

Glutathione -- There is evidence that processing of glutathione does

not work properly in Parkinsons' patients. However, glutathione

given orally or by injection does not cross the blood/brain barrier,

so " you could inject a gallon of it and it would have no effect. "

I'm sure I missed a lot of what was said, but I hope some of my notes

are helpful to others. I wish you all could have been there!

>>

>>

[Guest guest]

Hi Pam,

Thanks for your message re NAC etc.

I have also noted with much interest the posting by Ron Ritch under the subject 'Digest Number 1486'. I think pspinformation.com is a great site for people with all kinds of brain disorders.

Anybody interested in checking NAC out further might also want to look at:

http://www.geocities.com/casupport/

which covers NAC for SCA3/MJD.

Regards,

Fred

[Guest guest]

Hi Pam,

Thanks for your message re NAC etc.

I have also noted with much interest the posting by Ron Ritch under the subject 'Digest Number 1486'. I think pspinformation.com is a great site for people with all kinds of brain disorders.

Anybody interested in checking NAC out further might also want to look at:

http://www.geocities.com/casupport/

which covers NAC for SCA3/MJD.

Regards,

Fred

[Guest guest]

Hi Pam,

Thanks for your message re NAC etc.

I have also noted with much interest the posting by Ron Ritch under the subject 'Digest Number 1486'. I think pspinformation.com is a great site for people with all kinds of brain disorders.

Anybody interested in checking NAC out further might also want to look at:

http://www.geocities.com/casupport/

which covers NAC for SCA3/MJD.

Regards,

Fred