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Bad News For Pwn Who Prefer Eds Tx'ed W/high Dose Stimulants.

we need better repping

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#1 doinmdarndest

doinmdarndest

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Posted 21 February 2013 - 02:57 AM

there are those of us pwn whose n. symptom tx-eds/fatigue is sub-optimal, or in some cases is witheld because we do(or would) not respond to our stimulant rx except in mg/d amts. > those normally rx'ed.

 

for us, manufacturer's reccommended maximum doses and similar guidelines md's follow when rx'ing stimulants can be an obstacle, preventing our being made wakeful, or as fully wakeful as we could be w/our stimulant rx in medically appropriate higher doses.

 

we need advocacy/representation.  the appropriate powers that be must be encouraged/convinced that they need to reconvene and raise the maximum mg/d amts. for the stimulants these guidelines now reflect.  for example, the manufacturer's recc. max. mg/d amt. for adderall = 60mg/d.  this should be 120-200mg/d. 

 

i wish i knew how to cut/paste/however you put excerpts from elswhere in cyberspace in an nn post.  then i could cite anonymized posts iv'e read telling of sub-optimal tx, many of which specify mg/d amts. in explaining how these #'s were arrived at.

 

i also wish i could cut/paste/attatch to this post my email correspondence w/nih/ninds in which i have begun pursuit of the forementioned goals.   then all could see what i have attempted and how, so as to allow for advice as to what could be done better/different.

 

now, the bad news:  the only one repping for us is me- and i suck at it.  my lacking the know-how online to perform simple internet procedures like these two are the biggest part of why. 

 

over 2 years now i've been at it.  the impact i've had = -0-.

 

the ideal rep. has computer skills like fbi technical analyst penelope garcia from the tv show 'criminal minds'.

 

maybe such a person is willing to assist.  then maybe i, or whoever else may become involved/us as a group of activists could better rep. for us as a demographic.  for now i just don't have the makings to persuade the medical establishment in any way, to even the slightest degree, alone.  ever. (although i will go on trying, at least) 

 

on the construction site i'm an 'ace hand', if you will.  not online.  not here.

 

here, i suck.  and from all i can find, my efforts and the total combined effort now undertaken anywhere/everywhere in pursuit of high dose stimulants being more commonly rx'ed in the tx of eds/fatigue one day..........are one and the same.  i wish the news were better. 

 

best wishes, all. 

 

ps the good news its not too late for those of us pwn who wish their tx were in higher mg/d amts-and would benefit if they were as i've covered to get organized and make it happen.

let us not hesitate nor be remiss in such efforts, because nobody is going to make it happen for us, w/o our needing to do anything.  it is ours to do and WE can do it.

 

-doinmdarndest