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

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

Postby leroyb on August 13th, 2015, 5:38 am

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 :x

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

Postby Xina535 on August 13th, 2015, 5:51 am

leroyb wrote:ALS is not one disease, it is most likely hundreds with a common endpoint.

Ok, thanks - what a cruel, bas**rd, brutal, endpoint. :( :evil: :cry: :(

Re Prednisone: Yes, that definitely points away from you having ALS.

Thank you. I wish for Vince and many others that there were signs that pointed away. :( I get so angry that there are people suffering from this disease, it fills me up sometimes and I don't know what to do with it. The Cymbalta helps stabilize my mood, but I still feel it deep inside. I may need to go back to hypnotherapy to get in touch with my sub-conscious and try to get some peace.
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Re: "In 97% of ALS cases, TDP-43 wasn't doing its job"

Postby misterjuanperalta on August 13th, 2015, 6:04 am

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: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3743318/
Source: http://www.ncbi.nlm.nih.gov/pubmed/11642646

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.
Last edited by misterjuanperalta on August 13th, 2015, 6:30 am, edited 3 times in total.
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Re: "In 97% of ALS cases, TDP-43 wasn't doing its job"

Postby misterjuanperalta on August 13th, 2015, 6:10 am

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

Postby Xina535 on August 13th, 2015, 6:50 am

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

Postby crotwich on August 13th, 2015, 6:52 am

leroyb wrote: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.


Prof. Orla Hardiman certainly supports this view: https://www.youtube.com/watch?v=_0X0uQou-Cc
Xina, for what it's worth, I think that ALS shouldn't be on your radar. There are several of us here having similar symptoms, so you are not alone in this *beep*.
Regards,
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Re: "In 97% of ALS cases, TDP-43 wasn't doing its job"

Postby misterjuanperalta on August 13th, 2015, 6:56 am

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

Postby Xina535 on August 13th, 2015, 7:42 am

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

Postby misterjuanperalta on August 13th, 2015, 7:50 am

At the bottom of the forum the information is available as, "Our newest member Jarick1922".
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Re: "In 97% of ALS cases, TDP-43 wasn't doing its job"

Postby Xina535 on August 13th, 2015, 8:13 am

Oh ok! I see it - well, when I clicked on his username, it said he joined in Oct 2014.

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

Postby crotwich on August 13th, 2015, 8:41 am

Xina535 wrote:Oh ok! I see it - well, when I clicked on his username, it said he joined in Oct 2014.

:shock: :?


viewtopic.php?f=6&t=21455
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Re: "In 97% of ALS cases, TDP-43 wasn't doing its job"

Postby Xina535 on August 13th, 2015, 9:28 am

Oooooooh!!! I just saw that other thread. Thanks for that.

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

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