ALS: TDP-43 Ineffectiveness in 97% of Cases

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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 :(
 
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.
 
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?
 
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.
 
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.
 
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. :eek:
 
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 cascadein 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 difficultfor 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.
 
OMG - I regret ever asking about the auto-immune relation. :eek: :eek: :eek: 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.
 
Yes Xina. You have realised what the medical community have not for 50 years and are only realising now. ALS is not one disease, it is most likely hundreds with a common endpoint. PALS have been saying this for years but what would they know :mad: So all the clinical trials which were aimed at a general population of PALS and not even subsets (UMN or LMN dominat, bulbar or limb onset) were doomed to fail from the start. I doubt they will ever find the 'magic bullet' that halts all ALS types and 100 failed clinical trials so far would support that theory. Re Prednisone: Yes, that definitely points away from you having ALS.
 
Prednisone is anti-inflammatory for spine issues. "A short course of oral steroid therapy with prednisolone (10mg/day) or prednisone (10mg/day) is highly effective in reducing pain in patients referring with uncomplicated CR. Further studies are warranted on dosing, duration, and long-term efficacy and safety of oral steroid therapy, compared with injection approach."Source: Source: Note: It seems you have an inflammatory issue at hand. Further, not all MRI scans are the same. Quality and detection depends on how many layers of scanning are done. I think the layers are to be spread out every two to five mm/cm. I don't remember the unit of measurement, but I saw a lecture on it. Find out from your doctor. Regarding Prednisone, make sure to monitor your blood sugar as it can raise it. Sugar impacts nerves in good and bad ways. Make sure you try to keep that balance to avoid complications.
 
leroy_blue seems to be on point, not because I'm an expert, but because what he says makes sense and somehow fits with some of what I've said and researched.
 
It makes sense to me too. I appreciate all of your input. It helps a lot to be able to come here and discuss these sorts of things. I wonder if I should go to a totally different board since what I have is beyong just BFS, and I have joined other sites before, but I feel like I need to stay here since I am still twitching, and if I ever get to the bottom of this, I could come here and inform others. I also try to help new twitchers, but it does not seem like there are many new people.
 
That's a personal decision. Kevin O'Leary from Shark Tank says, "Don't say no to money." I say, "Don't say no to information." I really don't want to be in any forum. I could do much more entertaining things. If everyone did what you are considering, the impact could be very noticeable. Unfortunately, many have moved on because they were only here to find their source of twitching or just gave up worrying. Whatever the reason, it's a loss to those who are scared. Being here for others, not just self, is so important.
 
I agree about being here for others. I remember how I needed you BFSers when I first joined. I wonder though, if I remember correctly, when I signed up, I had to receive a welcome e-mail from John and....I sent him a message months ago about something admin related, and it still is not read. So could it be that new users are trying to join, but can't get activated? Is there a way to see if there are new users?
 

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