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Diagnosed With Narcolepsy But Negative For Hla Gene???


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#1 corey91386

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Posted 14 February 2013 - 08:50 PM

So I have been diagnosed with Narcolepsy 2 times. My symptoms have not necessarily correlated with others, but fatigue and out of it has always been a constant. At the last Narcolepsy convention I gave blood to test for the HLA gene. I just recently received my results and I do not have the gene. Now I am stuck pondering whether I do or don't have Narcolepsy. I was basically at the point in my life where I am starting to except this diagnosis. I have been on xyrem for the past 2 months, and steadily feeling great! Is it possible to have N and not the HLA gene???



#2 MINItron

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Posted 15 February 2013 - 12:08 AM

Yes, it is possible to have narcolepsy without having one of the associated genes, just as it is possible to have the genes without ever actually developing symptoms. This is not a unique situation among autoimmune conditions. The genes just give you the propensity to develop the condition, and there are other causes that can lead to the damage of the orexin cells. 



#3 doinmdarndest

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Posted 15 February 2013 - 04:07 AM

i'm certian from a discussion i had w/a stanford md that the hla test is only useful in dx'ing n w/c, not for n/w/o c.  he advised me of this as i do not have c. (do have 2.18 min. onset lat./7 min. rem lat.) and my hla test there was-.   i'm concur it's still possible to get hla- gene test result for one w/c., like MINItron pointed out.

 

-best wishes



#4 DeathRabbit

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Posted 15 February 2013 - 10:06 AM

The definitive test, I'm given to understand, is to submit for a spinal tap to check your orexin levels. however, that's painful procedure and you risk meningitis and other nasty stuff, so unless you just really want to know, I wouldnt bark up that tree.



#5 corey91386

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Posted 21 February 2013 - 07:59 PM

I am going to stray away from the spinal tap idea!! This Narcolepsy stuff is just very difficult. Symptoms get better and worse constantly. I think out minds are very powerful. When I got my HLA test back I told myself I don't have Narcolepsy and have given up all medications for going on 3 weeks now and lately I have been feeling great. Tired but a littly euphoric. Haha who knows? I have Xyrem, which I loved because I slept so good on. I have a feeling it is going to catch up with me real soon. I just forgot what is was like to not be medicated!!!



#6 DeathRabbit

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Posted 22 February 2013 - 09:57 AM

I am going to stray away from the spinal tap idea!! This Narcolepsy stuff is just very difficult. Symptoms get better and worse constantly. I think out minds are very powerful. When I got my HLA test back I told myself I don't have Narcolepsy and have given up all medications for going on 3 weeks now and lately I have been feeling great. Tired but a littly euphoric. Haha who knows? I have Xyrem, which I loved because I slept so good on. I have a feeling it is going to catch up with me real soon. I just forgot what is was like to not be medicated!!!

That's the constant cycle people with psychiatric or conditions relating to psychiatric issues(us) go thorugh. You go on meds and they help for a bit, but the side effects start building and the efficacy starts being pared. So you go off the meds and for a while you feel great, but then eventually you get reminded why you where on them in the first place. It's the reason most psychotic/schizoid people always go off their meds. People always wonder why, but those are the kind of people that have never had to rely on any sort of psychotropic to get through the day. I went on a medication holiday for a bit not too logn ago myself. Now I'm on a mood stabilizer and 5htp which seems to do ok. The 5htp helps me sleep better, the mood stabilizer prevents me from gettign overly emotional, which causes the sleep attacks I guess. Not really sure how it's helping the derp. It's lamictal if anyone is curious. I'd love to find another PWN that has been on lamictal.