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Janc

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Hello: I am new to ALS Forums. My brother has sporadic ALS. Symptoms first began
01/2013.

I have read numerous articles about causes of ALS. I have been in touch with Michael
Hoffmann, a German scientist and researcher whose wife is 5 years into ALS.

This article is from Dr. Hoffmann:

http://www.aascit.org/author/download?paperId=531&stateId=8000&fileType=3



This article is about uncoupling proteins:


Up-regulation of mitochondrial uncoupling protein 3 reveals an early muscular metabolic defect in amyotrophic lateral sclerosis


Dr. Hoffmann suggests trying to find supplements that would decrease hyperactivity
of uncoupling proteins. Currently, he suggests: 1) Gardiniae Fructuse Extract, 2)
Genipin (active ingredient in#1), 3) American Ginseng, 4) Creatine.

Dr. Hoffmann also suggests that the medulla oblongata is involved along with increased
Sympathetic Nervous System activity.

There is some research I have discovered that suggests Gardiniae Fructuse extract
(Zhi Zi in Chinese medicine) helps reduce uncoupling protein activity.


I just wanted to share this. Dr. Hoffmann's theory is a different way of looking at
cause of ALS. He believes it takes years for ALS to develop and it may take some time
to slow or halt progression.

Hope this helps stimulate discussion.
 
"sporadic" and ALS do not mesh
 
>I suppose another plausible explanation that hypertension incidence is trigged by the underlying cause of ALS

very likely ...


-----
Max - Friday, July 18, 2014 12:53:18 PM
-----
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...

.
 
Sporadic ALS is the medical term for non-genetic ALS. They are SALS. Those of us who are familial are FALS ( I recently heard of GALS which means a person has ALS and a confirmed genetic mutation)
 
Dr Hoffmann's article is not research but theorizing as he extrapolates from information from various sources. This is fine as long as you realize it is the opinion of one person whose qualifications I could not easily determine. It was published
by an organization with a very broad membership that includes physicians but also many other disciplines. It was not clear who " peer reviewed" it Were they neurologists or even physicians at all. I am not against alternate approaches if one wishes to pursue them but this article is far from hard science
 
Dr Hoffmann's ... article is far from hard science

Mega dittos.

I'm always skeptical, especially about ALS, where we naturally are desperate for any hope we can get. We've seen some real junk science from true charlatans.

Sorry, but I don't think Hoffman's article advances the science. Apparently the association doesn't have editors, either. I could be wrong, but it's possible AASCIT is a junk journal, publishing anything it gets. Note that the article came in Volume 1, Issue 2, so it's a very new endeavor.

FASEBJ, on the other hand, is well known and the article seems helpful.

Thanks, Janc
 
Sporadic ALS is the medical term for non-genetic ALS. They are SALS. Those of us who are familial are FALS ( I recently heard of GALS which means a person has ALS and a confirmed genetic mutation)

ok, thanks for the clarification Nikki, I thought the poster was saying her brother had sporadic symptoms, as in the symptoms came and went.... and that would have not made sense
 
Hi All:

I am new to this forum. Just to clarify: my brother has been tested for familial/genetic ALS. These tests proved negative. It is my understanding
that he has non-familial or the sporadic form of ALS. His symptoms do not come and go. He is deteriorating.

Dr. Hoffmann's article in the posting is not scientific refereed journal material. He acknowledges that it is strictly his theory.

From what I have been able to gather, there appears to be some interplay/disarray with motor neurons and support matrices - astrocytes,
glial cells, oligodendrocytes, mitochondria, etc that leads to motor neuron destruction, whether familial or genetic. I can find no research
that identifies definitive cause of ALS.

So, I shared Dr. Hoffmann's theory as food for thought and discussion. Perhaps it will lead to some answer(s) as to ALS cause sooner rather
than later.

To those of you who have been diagnosed with ALS: I see my brother deteriorating and I have great compassion and empathy for what
you are going through. I have spent many hours on behalf of my brother reading research articles and other information regarding ALS
in order to become as educated as I can and then think outside the box in an attempt to help solve the puzzle.

with great regard,

Janc
 
Thank you Janc

I am very sorry about your brother. He is lucky to have you on his team.
You are right ALS is poorly understood although for those of us with FALS they are starting to see how our gene defects start the process. They hope that information will lead to understanding of SALS too.
Theories are interesting of course. Just want to be sure people understand them for what they are theories which need to be proven true or false. Not proven facts.
 
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