Started Lunasin Study

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Nuts

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We just came back from Matt's one month Lunasin Study appointment, where I broke down and cried. The only suprising thing about those tears is that they were happy ones.

We knew Matt had started wiggling toes on the right foot after not being able to move the leg, foot, or toes at all for months. That started at week one. He wiggled those toes to our great delight. What I didn't expect was to see him move his entire foot off the footplate of his chair and then move it backwards 4 inches while attempting to return it to the footplate. We all three, he, the study coordinator, and I, sat there with our mouths open until I started crying the third time he did it.

Fasciculations have also reappeared in his upper thighs, but just at night when he's in bed.

What else? I think his arms are a bit stronger, but we'll hold off on any pronouncements there until we're sure it's not wishful thinking.

We're told that four people so far have seen or felt some sort of improvement (of the 30 taking the supplement now).

We talked a little about Mike Duff. It seems he saw improvement and stability for about two years before things started sliding again.

I'll take it. Let's hope this is for real that than it lasts at least that long.

Becky
Queen of Hopeful Thinking (which is a very, very scary thing)
 

affected

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Wow Becky, I can't express how much I hope this continues and lasts!

Those of you willing to go into trials have my sincere thanks. I can't imagine the emotional ups and downs of entering a trial, trying not to hope too much, but hoping anyway, wondering about placebos, sometimes having side effects, and mostly just watching and wondering ...

How incredible to see that movement when it had been absent for so very long!
 

Nikki J

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Oh Becky. That is wonderful news! ( happy tears here too)
 

GregK

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Cool, thanks for sharing?
 

scaredwifetx

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I am so happy for the two of you Becky. We have had two calls to get into this trial and I just spoke with the last week. Steve is in another trial right now and we have not seen any success but we are not sure about taking the time and money for a trial in Carolina. We may need to re-think that now.

We were told that they would find a spot for us if we decided to get out of his present trial and join the Lunasin trial.
 

chally

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Great Becky& Matt, I am 2 wks in now. Not sure I see anything yet but hopeful. Love ya chally
 

maryhahnward

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Becky - love this news, thank you for sharing!
 

frankb

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Great news, Becky ! Good news indeed. Congrats.
 

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How are things going Becky???
 

Lkaibel

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Could someone offer more information on buying it on your own to follow the regimen? I know Amazon sells it, but don't know the regimen.

I don't want us to jump on snake oil trains, but if it's legit enough for a study and it's basically a suppliment, it may be worth a go.
 

Nikki J

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It is posted on this thread https://www.alsforums.com/forum/als-drug-trials/32500-would-like-opinions-advice-lunasin-trial.html

I don't think it is a crazy thing to try but it was chosen for study as part of Dr Bedlack's ALS reversals work. There is a NEALS webinar in the archives where he speaks about it. It is a very different selection process to try than the more traditional drug studies. That said, some people have had encouraging results at least initially. Other report no change in progression, still others can not to,erate and I just read a post elsewhere that someone felt it was making them worse. Which is unsurprising as ALS is, as we know, a collection of diseases, not just one
 
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Lkaibel

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Thanks Nikki, may be worth a try as I said I will look into it and discuss with Brian.

I have a feeling that the big break through in the treatment of this beast when it finally comes will be something complex - like the enormous drug regimes used to keep HIV in check (now successful for decades in many patients, the words "normal life span" are being whispered...). I imagine something like: Good news, you get to move, breath, and live, bad news bring a wheelbarrow to the pharmacy, you will need it". I hope I live to see that great day :)
 

azgirl

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I just placed order for the same products being used in the trial and thought it was worth giving a try. Cost was $390 for a one-month supply. I found some of the products online, pricing the same or even higher. The woman I've purchased from seemed quite knowledgeable about als and the trail doctor bedlack is running.

My doctor diD thorough testing my strength, breathing, etc. at clinic last week, so she will be able to note any changes.
 

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Hello everyone. I left Mayo Clinic this afternoon with a confirmed diagnosis of ALS. I'm a little rattled yet and I hope I can join in here and receive comfort and hope and I hope I can contribute something to help others. I'm curious about this Lunasin trial. What is it, where can I buy it and how much do you take? I would like to get started if it even offers a chance of success. I appreciate any help with this. Thanks.
 

Nikki J

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So sorry for your diagnosis. Please also start a thread on newly diagnosed so we can get to know you better.

Re lunasin dose see the thread I linked a couple of posts above. I know it is a terrible terrible day when your diagnosis is confirmed. Take a little time to absorb. Read about some of the different tnings people try. I personally would say look also at tudca and if you are early stages methylcobalamin. ( a form of b12) there are threads here on both. Look at medical marijuana too. Lots of discussion here for that as well You can't possibly take everything that someone recommends. Aside from the cost there is a limit to how many pills, powders, liquids and injections we can tolerate.
 
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