@njguy
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NJGuy started the topic Breakthrough discovery to reverse ALS at Tel Aviv University – Misfolding TDP43 in the forum Research Topics 6 months, 1 week ago
Hi All
Hope you are in great spirit!
I came across this news: a breakthrough discovery at Tel Aviv University :
This addresses the problem of TDP-43 protein misfolding.
My question is: there is already a…[Read more]
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NJGuy started the topic Has anyone added sulforaphane in diet? in the forum Research Topics 7 months, 1 week ago
Hello friends:)
Hope you are all doing great!
I came across following article regarding how Sulforaphane works as neuroprotective phytochemical.
https://pubmed.ncbi.nlm.nih.gov/23983898/
I think any dietary source for sulfur can be really useful, vegetables that are good source for sulforaphane are : broccoli, cauliflower, kale,…[Read more]
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NJGuy replied to the topic In the Media in the forum ALS In The Media 7 months, 2 weeks ago
Yes I totally agree with Richard 🙁
And there seems to be no action plan or initiative, and the trials take their own pace.
AND pALS are suffering! And God only knows when there will be a real cure!
What is the way out????
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NJGuy replied to the topic Using immunosuppressant drugs to halt / slow down ALS progression in the forum Research Topics 7 months, 3 weeks ago
Hi Jim
Actually there is a clinical trial (recruiting now) which I mentioned earlier. So my doctor says I should go for that. But I am thinking to buy on my own, and for my doctor to prescribe this drug, I need to wait a few weeks due to holidays. One of the Japan pharmacy may not need prescription –> https://bio-japan.net/ketas-ibudilast. The…[Read more]
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NJGuy replied to the topic Using immunosuppressant drugs to halt / slow down ALS progression in the forum Research Topics 8 months ago
Hi
I think I would better order Ibudilast from Japan rather than to be on trial, since on trial there will be 50/50 chances to be either on drug or placebo.
@Andrew, Thank you so much for your inputs!
Wishing all the best to you all!
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NJGuy and
Andrew UK are now friends 8 months ago
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NJGuy replied to the topic Using immunosuppressant drugs to halt / slow down ALS progression in the forum Research Topics 8 months ago
Hi Andrew,
Thank you so much for sharing the information about Ibudilast, this is exactly the same idea that I mentioned above. Here is a link which describes the trial related to this drug
This drug works to modulate/control the immune system for either genetic / sporadic pALS. It plays important role…[Read more]
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NJGuy started the topic Using immunosuppressant drugs to halt / slow down ALS progression in the forum Research Topics 8 months, 1 week ago
Hi All
Hope you all feeling great today!
I have been reading a lot about causes / possible mechanisms / possible treatments for ALS. Among other possible causes (inflammation / toxicity / genetic / gut microbiome / protein folding / mitochondrial etc ) one of the possible one is response of immune system to the antibodies, T cells, chemokines…[Read more]
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NJGuy and
David Snyder are now friends 8 months, 2 weeks ago -
NJGuy and
ASOKAN are now friends 9 months, 1 week ago
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NJGuy started the topic Clenbuterol – trial NCT04245709 by Dr Bedlack in the forum Research Topics 9 months, 2 weeks ago
Hi
Hope you are all feeling great!
I just watched this recent video published on 9/25 by EverythingALS which covers the clinical trial for Clenburterol by Dr Bedlack, he also talks about promising outcomes – https://www.youtube.com/watch?v=1byZl9vldEo
Anyone thinking of trying out Clenbuterol? This is normally available as muscle growth…[Read more]
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NJGuy replied to the topic Coffee and NAD+ — Anyone see any improvement with these two? in the forum Living With ALS 9 months, 2 weeks ago
Nicotinamide adenine dinucleotides, NAD and NADP (NAD+), are indispensable cofactors involved in several redox reactions in all forms of cellular life. NAD+ is <b>an electron carrier which will pick up electrons during the</b> course of cellular respiration. Very important for the cell functions.
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NJGuy started the topic Coffee and NAD+ — Anyone see any improvement with these two? in the forum Living With ALS 9 months, 2 weeks ago
Hi
Hope you all feeling better!
I came across this article – Coffee and NAD+ I was a coffee drinker when working in office before Covid pandemic started (sometime in Mar 2020), but then working from home that was discontinued.
I have now included at least two cups of coffee and NAD+ along with other supplements for about a couple of…[Read more]
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NJGuy replied to the topic Have you changed your diet since being diagnosed with ALS? in the forum Living With ALS 9 months, 2 weeks ago
Hi Duane & Susan
sorry to reply to this so late!
I had always been to my primary just for annual check ups, and last couple of years my PCP saw the cholesterol on border line and he told me to be careful, and so I had stopped or reduced on fatty foods – 1% milk, avoiding cheese/pizza and fried food etc. And in almost 1 year of trying to lower my…[Read more]
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NJGuy and
Sonsu are now friends 9 months, 3 weeks ago
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NJGuy replied to the topic Riluzole side effect in the forum Living With ALS 9 months, 3 weeks ago
I started with Riluzole 50mg 2/day but after taking for about 4wks, it gave me lot of weakness and lost appetite, so I talk to my neurologist, he suggested to stop for sometime. After stopping I really felt much better. I am thinking of taking 1/day.
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NJGuy replied to the topic Member Check In (pALS, caregivers, and other community members) in the forum Living With ALS 10 months, 1 week ago
Glad to hear that!! Would you please keep us updated how you feel / improve on any symptoms?
Wishing you all the best!!
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NJGuy and
Amanda are now friends 10 months, 1 week ago -
NJGuy and
Janice are now friends 10 months, 3 weeks ago
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NJGuy replied to the topic Stem Cell therapy for ALS in the forum Using our Forums 10 months, 3 weeks ago
Janice,
Can you please share details of clinic where you received stem cell therapy? I and my family will be really so thankful to you!
best regards
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