Propofol reverses symptoms

[Wings]

thanks cypress - i assume luserda or diprivan are other tradenames for propofol - ?

interesting too just been reading on the other forum thread re laughing gas..

This is such a potentially big break through for mnd/als, i feel that for the furture of beneficial/therapeutic remedies for anyone suffering/dying from this disease, i just cant let it pass without at the very least - tryiing to trial it myself.

I dont understand why there is not alot of discussion about it in this forum (there is in the oher forum) . Perhaps apathy is a far more intoxicating symptom of mnd/als than realised/acknowledged.

Great to have a forum focus for healing wounds - not licking them

 

[cypress]

Wings,
Right you are. ALS picked the wrong guy to mess with. I decided early on that it was up to me to find a cure as I have the most to lose. Lots of obstacles left,but we won't climb hem if we don't try.

Blessings,
Jim


P.s check out the baicalin thread.

 

[Wings]

Just read the forum thread baicalin in the other forum - i am assuming it wont do any harm to be taking this while also trialing propofol - ive also just searched online and seen it can be bought as a supplement -cheap need to see if i can source it locally.

 

[Wings]

btw - olly -cypress ishcan -and others you are truelly so helpful and amazing with the info you are sourcing and sharing - i so deeply apprecaite it - some of the 'scientific docs' i scan read and get the general gist but thank goodness you take the time to line up all the duckies

I know it could be wise to have a few supplements and trial the propofol predominantly on its own - but if a combination of therapeutic suggestions makes sense so that they all enhance each other then i think that could be the way to go?

 

[Wings]

have posted cypress but has gone to mods -hopefully it will here soon

 

[Nighthawk]

I heard, or should say read at ALS--TDI Forums that if Propofol becomes difficult to test on PALS because of the refusal by some Researchers and some Doctors, that there might be other anesthetics that would also bind to the same cellular receptors as Propofol does but, this is being investigated by searching for scientific papers and/or abstracts related to that.

Will keep posted when I find out.


NH

 

[Debd4l]

ALSUntangled Alsuntangled is requesting data on PALS who have tried propofol. Please send to [email protected] or fax to 919 668-2901.

 

[Nighthawk]

I've been reading some more testimonials at ALS--TDI Forums about some other PALS who underwent some surgical procedures unrelated to ALS which Propofol was the used anesthesic and they claim that their ALS symptoms improved.
All this has sparked my curiosity on this drug.
Let's hope it's not just a "placebo effect" and the improvements last long enough.
I think ALS--Untangled is collecting PALS testimonials to conduct a serious review of this molecule.


NH

 

[Jeff Long]

I am having the DPS inserted later this month and specifically asked about (and for!) propofol. I'll see Dr. Bedlack soon after the surgery and hope to have some good info for him related to how it affects my symptoms. We shall see!

 

[cypress]

I am having the DPS inserted later this month and specifically asked about (and for!) propofol. I'll see Dr. Bedlack soon after the surgery and hope to have some good info for him related to how it affects my symptoms. We shall see!

Best wishes,Jeff. Measure what is limited now so that you can quantify changes. Range of motion,recorded speech,etc. most of us that got large improvement were in the 1000 mg range. See if you can encourage a little dose stretching.

Blessings,
Jim

 

[AlabamaGal]

I find this all so fascinating.....and "Cypress" glad to know you in person! You are amazing! We don't want a P.E.G., but thinking about it again just for the purpose of getting/requesting Propofol.

 

[Jeff Long]

Jim,
Thanks for the info. Somewhat limited symptoms after 20 months, but I've recorded their "progression" all the same.
Didn't realize my speech was so impaired until last week... had to record a message on the phone system at work and when I played it back, well, let's just say I didn't sound too good. Or smart! Ended up having one of my employees do it because I really sounded drunk or slow! Kinda humbling...
Jeff

 

[AlabamaGal]

@ Nighthawk. To say Ron is disappointed us putting it mildly, I am sure. Could you send me the link to the propifol thread in a PM? Doing OK here I guess. Trying to figure out how to get Congress to revise the Services Connection law that means my husband can not be Service Connected. He was Army Nat Guard, and for 6 yrs worked full time for the Az Army National Guard in a " civilian" status. His 90 days Active Duty were considered as Training, and the way the law is now, he is not a service connected Veteran. My daughter graduates this month, and we will be losing her SSDI, which us a third of our income. I am going to go back to work, so we can pay our rent, but Les is unable to walk or even move by himself, so it Is going to be a terrifying time for him. His dog and him alone at home may not even be possible, but we have no choices.

sadiemae.....just want to say we are in the same boat as you. I can't imagine next year when my youngest turns 18 and the SS decreases so much. I know I will have to find a job.....and who can afford full-time sitters---not us. My husband cannot help himself either. Prayers for both of us and any others like us.

 

[Nighthawk]

@Jeff Long:

Could you please create an account at ALS-TDI Forums?
They have an ongoing thread about Propofol there (about 34 pages long, so far) and are collecting anecdotal evidence of improvements of ALS symptoms in patients after being treated with Propofol as anesthesic.

They want to submit this anecdotal evidence to ALS-Untangled so they can conduct a serious review of Propofol and the potential improvements this anesthesic could do on PALS.

Should the improvements be proved, then a study on humans and/or mice can be conducted and...who knows if this drug can be used in the future to treat PALS.


NH

 

[Jeff Long]

Nighthawk,
Hey, I can't dance so I may as well create the account! I actually read through it before it became a members-only deal. I will also be able to give my input directly to Dr. Bedlack. In the future, if they test this on mice I'll let them know that I like cheese!