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"In 97% of ALS cases, TDP-43 wasn't doing its job"

PostPosted: August 11th, 2015, 10:30 am
by Xina535

Re: "In 97% of ALS cases, TDP-43 wasn't doing its job"

PostPosted: August 11th, 2015, 11:09 am
by leroyb
It's a step in the right direction for sure but they have known about TDP-43 for a long time. When they recognised SOD1's role in familial ALS they thought they'd have a treatment soon.....20 years later still waiting :(

Re: "In 97% of ALS cases, TDP-43 wasn't doing its job"

PostPosted: August 11th, 2015, 12:07 pm
by Xina535
really!? I thought this was new, news! I hope this Phase 3 trial does something!

Re: "In 97% of ALS cases, TDP-43 wasn't doing its job"

PostPosted: August 11th, 2015, 2:15 pm
by leroyb
In a small subset of cases it might improve FVC a little bit.

I'm not trying to be pessimistic but that's as good as it gets for tirastemiv - it was a large disappointment.

Re: "In 97% of ALS cases, TDP-43 wasn't doing its job"

PostPosted: August 11th, 2015, 2:18 pm
by Xina535
:( :(

what is FVC?

Re: "In 97% of ALS cases, TDP-43 wasn't doing its job"

PostPosted: August 11th, 2015, 7:02 pm
by misterjuanperalta

Re: "In 97% of ALS cases, TDP-43 wasn't doing its job"

PostPosted: August 12th, 2015, 5:24 am
by leroyb
FVC is forced vital capacity.

Re: "In 97% of ALS cases, TDP-43 wasn't doing its job"

PostPosted: August 12th, 2015, 5:51 am
by Xina535
Thanks Leroy :)

Misterjuan - aka internet magician - the link mentions rabbit. Does this mean that we can get this anti-body TDP-43 tested as a blood test?

Also, I am confused here. I thought antibody = autoimmune and I thought autoimmune meant something pointing away from ALS. Or am I mixing things up?

Re: "In 97% of ALS cases, TDP-43 wasn't doing its job"

PostPosted: August 12th, 2015, 6:52 am
by misterjuanperalta
Based on the section "Species Reactivity: mouse, human, rat" in that test, it seems the antibody test can be performed on humans, but it may still need further testing and approvals. Refer to said page.

Re: "In 97% of ALS cases, TDP-43 wasn't doing its job"

PostPosted: August 12th, 2015, 7:02 am
by Xina535
Thanks, I missed that.

Any comment on the auto-immune question I have?

Re: "In 97% of ALS cases, TDP-43 wasn't doing its job"

PostPosted: August 12th, 2015, 7:41 am
by misterjuanperalta
ALS and BFS are a multi-system disease because of our body's response to commands by our CNS. Because the nervous system instructs our body and systems to act, overreact or respond, one's auto-immune system could be impacted. If there is a nervous system disorder, such as in BFS, you may notice more symptoms without explanation. When my "BFS" began, I developed sinus and allergic symptoms that I did not experience before while exposed to the same environment. All, I think, is caused by a nervous system that is communicating instructions at the wrong time or without a true need to do so. I could be wrong. I'm just being analytical.

PS I watched a testimony by an ALS patient who stated that anxiety and stress aggravate his symptoms, a possible example and how it is similar to BFS.

Re: "In 97% of ALS cases, TDP-43 wasn't doing its job"

PostPosted: August 12th, 2015, 9:28 am
by Xina535
Thanks for your "analysis" :)

I guess if they don't really know what causes ALS then it makes sense it could be from a form of auto-immunity.

I agree that stress and anxiety can make ANY condition worse, from a common cold to cancer. I think that is pretty much universal among any illness.

The statements above are quite scary to me. :shock:

Re: "In 97% of ALS cases, TDP-43 wasn't doing its job"

PostPosted: August 12th, 2015, 11:28 am
by misterjuanperalta
No problem. Chromosome 14 is associated with ALS and others too, but TDP-43 is in Chromosome 1 at position 36.22.

Source: http://ghr.nlm.nih.gov/chromosome/14/show/Conditions
Source: http://ghr.nlm.nih.gov/gene/TARDBP

Re: "In 97% of ALS cases, TDP-43 wasn't doing its job"

PostPosted: August 12th, 2015, 12:04 pm
by leroyb
The ALS as auto-immune theory has been resolved in my opinion and it is not.

There is a huge role of the immune system in ALS though and its thought it is the main driver of the neuro -degenerative cascade
in fast progressing ALS. Basically your immune system is killing misfiring but otherwise healthy neurons which it 'think's' need to be removed.

Prednisone and other anti-inflammatories to date haven't shown much effectiveness with ALS but it was discovered recently that it is difficult
for most of these to cross the Blood Brain barrier and your CNS is very efficient at pumping out any foreign material that does that get in.
They seem to have possibly found a way round this so I guess abti-inflammatories will be clinically trialed again st some point.

Re: "In 97% of ALS cases, TDP-43 wasn't doing its job"

PostPosted: August 13th, 2015, 5:05 am
by Xina535
OMG - I regret ever asking about the auto-immune relation.
:shock: :shock: :shock:

One thing with my arm is that clinical strength came back after taking prednisone. So everyone thinks that what is going on in my arm is inflammatory or auto-immune, like a neuritis. If I responded to prednisone, and in ALS there is no response, then I will take that as a good thing.

I am amazed and confused really, at all of these "theories" of what causes ALS - there seems to be scientific proof of lots of things that can cause it. From green algae, to sugar/excitology, auto-immune, and lots more....makes me think that maybe a combination of some of these could cause it or any one of these things. And I wonder then, if any of the causes are found, then maybe one person with ALS needs X treatment and the other person needs XYZ. I hope this makes sense. I am not awake yet. The Seroquel knocks me out and keeps me foggy for most of the day.