Narcolepsy Forum Posting

Posted by chucker on July 05, 2001 at 10:12:27:

In Reply to: should i see my doc? posted by ee on July 03, 2001 at 06:53:45:

jen's on the money ee. there are many variables, combinations of symptons involved. and, you haven't told us enough to really think of anything other than the possibilities she mentioned. could it be, sure. do you wan't it to be, no. should you find out soon as you can.... yep.

because it's the unknown and because we fear that, we often hesitate to take that step. always putting it off till anohter time. we know we can make it another day, we hope whatever's wrong will go away and........ we're too damn tired to do anything other than just get through the day. get someone to help if you can and keep in touch with us so that we can at least tell you what to expect if in fact n is involved. not with n as much as what will happen at your sleep test etc.

there is one thing you must know at this juncture. your dr may not have a clue... i know, sounds crazy but the average narcoleptic sees 5 drs before a diagnosis is made. is that because the symptons of n are vague? difficult to detect? litle known about it? no, no and no. it's primarily for 3 reasons.

1 the sufferer is uninformed and unable or even unwilling to divulge all that a doc needs to know to see a clear picture. usually that's the result of self doubt, having been deemed lazy by others and having met with something other than cheary faces when the grocery shopping doesn't get done, right? and, having met with that "yeah yeah, we know you'd like to help but you can't because you're tired" crap or "hey, i get tired too but i still do what needs to get done" garbage. and, of course we don't want anyone, including the family doc the think we're lazy! God forbid! consequently we hesitate to go to the doc... i mean what if he says there's nothing wrong? holy nightmares batman.... am i lazy? can't tell anyone about that and once we get there we're a bit hesitant to spit up the whole story. the symptoms of n are specific and consiquently, in most cases, so is the diagnosis.

2. the base assumption that docs are all knowing and of course if it is n he/she will recognize it and order a sleep test (that's the only for sure way to know if it's n) not true. MAKE SURE that doc is a neurologist familiar with sleep disorders. best way to find one is by calling your local sleep center and get a referral. that's not something i dreamed up and is in no way a blanket condemnation of the med profession. it's a fact gleened through years of suffering and a revue of the archives here at sleepnet. there are 4 or 5 basic questions involved after which a decision can be made to pursue your disorder as possible n and order a sleep test. they're questions that are indiginous to n, things that only we can answer positive to.

3. because of the above, the sufferer doesn't take charge. they let others, family, friends, docs etc, and the social ramifications involved dictate their course of action. there's nothing wrong and everything right about saying... i believe i may have narcolepsy and i like to find out if i do. will and can you help me? then, because by that time you'll have read the front page of this site with diligence, used the definitions page and put words into the search engine on this page that you don't understand, you'll be asking the questions, you'll already have a good idea whether or not you have n and you'll be ready to do the things that can be done to help you get the groceries home on time.

good luck ee and may God Bless your efforts to find out what's wrong. please keep us informed and remember.... you're in charge!

chucker

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