3 replies to this topic

[sleepymichael]

I am a typical N. Possibly a user of this forum. my spouse , with no n symptoms, but easily falls into rem is now realizing that his/her symptoms, not daily sp, hp, eds,has none of these, but I am a severe N and therefore this person knows what to say at a doctors visit. sorry for the bad grammer but am afraid someone will recognize me my spouse used to abuse ghb, as i also did, but maybe twice,as college kids, now my spouse , who immediately falls into rem, is going to a sleep neurologist to get these drugs,

i know there are more n's than were origannaly thought, but what about those who are technically n but have complete control, can have a + mslt, but know it will get then GHB. What are we supposed to do techniccaly they are n on paper. but reaaly they r not. i know because my spouse has told me so and taken my xyrem for fun. please do not comment on love issues as i know the issue here my problem is how do we preventpeople with what i say is slight n from getting our needed rxs. please help

[greatbig47]

I am a typical N. Possibly a user of this forum. my spouse , with no n symptoms, but easily falls into rem is now realizing that his/her symptoms, not daily sp, hp, eds,has none of these, but I am a severe N and therefore this person knows what to say at a doctors visit. sorry for the bad grammer but am afraid someone will recognize me my spouse used to abuse ghb, as i also did, but maybe twice,as college kids, now my spouse , who immediately falls into rem, is going to a sleep neurologist to get these drugs,

i know there are more n's than were origannaly thought, but what about those who are technically n but have complete control, can have a + mslt, but know it will get then GHB. What are we supposed to do techniccaly they are n on paper. but reaaly they r not. i know because my spouse has told me so and taken my xyrem for fun. please do not comment on love issues as i know the issue here my problem is how do we preventpeople with what i say is slight n from getting our needed rxs. please help

I don't think your going to get a whole lot of love advice here, not on this one.

I think you know what the right thing to do is. Just do it.

Are you hoping someone will tell you what to do, and hope it agrees with you?
Are you hoping to hear, "Oh, as long as it only happens once..."

I've personally met wonderful people who fought to make Xyrem available to people like me who know how it can increase the quality of life. What can you do that compliments all the hard, honest work these people contributed to people with our condition? Anything?

Do the right thing and be proud you did, for the sake of us who need it, please.

[sleepymichael]

thanks great big,
but i was referring to a different issue. I am already in the process of leaving. for more reasons than this. it just got me thinking. it used to be that only 1 in 250,000 had N. Now they feel it is more like 1 in 50,000.

I feel that there may be a lot of people with technical n -rem very early, but no eds, sp,hh,cat-like my spouse that are going to do the same thing. Shouldn't there be a way to evealuate and assees n pts to prevent the rxs getting into the wrong hands.

I understand your answer. i just want to let you know i have the same intentions same need to have the drugsavailable. this is the purpose of my question.

[greatbig47]

I think that it may be being abused, and too many people may be faking a diagnosis. I think it may become the diagnosis-dejour like bi-polar disorder is/was. It is sad, but I know how the medications make life so much better.