mci-186

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AfraidButNotAlone

Senior member
Joined
Jul 27, 2013
Messages
538
Reason
PALS
Diagnosis
07/2013
Country
US
State
GA
City
Atlanta
Heard of a guy on another forum who is self medicating.

Gaining fascics where he had none before.

I see the trial in Japan.

I was wondering, anybody hear anything else about this?
 
don't do anything until you see it published in an acceptable medical journal
 
don't do anything until you see it published in an acceptable medical journal

You keep thinking like that and this thing will never be solved. We have to self medicate, use drugs off label and experiment ourselves. If we wait for researchers then this generation of PALS will be dead by the time they find something. What do you have to lose if it doesn't work? Unfortunately, it is thinking like this that has us where we are now, NOWHERE over a 100 years later. My GP is a pretty compassionate guy and has been willing to prescribe some drugs off label. I am taking an FDA approved drug that is currently in phase 1 trials for ALS. Why wait 10-15 years? Take it now and see what happens.
 
I'm not trying to debate the merits of self medication. I'll keep my opinions about that to myself.

I was just curious if anyone had heard anything about it.

I know it is in approved trials.
 
Jpsteeler99, what are taking?

I am presently taking 2 drugs off label. Always willing to try something.
 
George 123 what is it if approved for what one year rasagiline drug trial nine months off label azilect. same thing does it help ?
 
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