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#1 Irishhh

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Posted 26 May 2009 - 12:57 PM

So now that it has been proven to be autoimmune, do you think this hinders the likelihood of getting disability for people with N? or would it be a good thing for those who need it? Are they more likely to listen to us? Or will they sweep us even further under the rug?

I mean before it was like, oh whatever, it's probably all in your head (which it mostly is!) but now, it's more visible, people can see it and understand that it is real a little more.

I think.

What do you think?

#2 sleepless sleeper

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Posted 26 May 2009 - 05:28 PM

actually, they've thought that it was autoimmune for a few years. Even the CDC had N listed as being 1) environmental/ autoimmune disease and sometimes 2) hereditary. This was 3 or 4 years ago. But you're right. Maybe now the funding will be better. I don't think that finding out N is autoimmune will damage it's disability status. That's what is so sad: Even though N has disability status, drs will still treat symptoms as mental dx. I think that this announcement will help N, though. REsearch and patients.

#3 dogdreams

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Posted 27 May 2009 - 01:13 AM

half the population has N genes but for some reason sleep docs hold that in higher esteem than actual symptoms, so it can help you if you have the genes and hurt you if you don't. But it's nothing new, anyway...the whole autoimmune thing. Docs will still treat this as a mental issue when they don't know what they're doing, which seems like most of the time, even docs trained at Stanford. Go figure. I guess you can lead a horse to water but you can't always teach a doc to listen. heh

#4 eightlegs

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Posted 27 May 2009 - 01:19 PM

QUOTE (dogdreams @ May 27 2009, 02:13 AM) <{POST_SNAPBACK}>
so it can help you if you have the genes and hurt you if you don't.


Unless you're like me, and DO have the genes, 2 out of 3 actually, and they still don't take you seriously...lol. *groan*

#5 eightlegs

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Posted 27 May 2009 - 01:21 PM

deleted because I somehow managed to quote myself... mellow.gif

#6 dogdreams

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Posted 27 May 2009 - 09:07 PM

QUOTE (eightlegs @ May 27 2009, 11:19 AM) <{POST_SNAPBACK}>
Unless you're like me, and DO have the genes, 2 out of 3 actually, and they still don't take you seriously...lol. *groan*

haha yeah...I participated in one of the Stanford studies and all I got back was a letter saying I didn't have DQB1*0602. Well for 10 years I got the stigma from that...was even told the odds were next to none I could possibly have N if I didn't have that gene. Yeah right. Then I recently found out Stanford included me in another study and I have DQB1*0301 and actually helped prove that gene is the 2nd most prevalent N gene simply by participating in the study. So HA! Shame on those stupid doctors. hehehe.... tongue.gif

#7 sleepless sleeper

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Posted 27 May 2009 - 09:49 PM

You guys crack me up.

Is it a sign that I have N and what you say is funny to me?

I wonder if we can find that as a genetic marker...

#8 jenji

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Posted 27 May 2009 - 10:50 PM

Hey.

Just got my genetic results back this past week: I have all three genetic markers. So, that along with two separate sleep studies is what my doctor referred to as a "solid diagnosis." Although we were already treating it, it still helps to know that I'm not crazy or misdiagnosed.

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#9 Irishhh

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Posted 28 May 2009 - 09:12 AM

Hey guys, how do I get a genetic study?

#10 sleepless sleeper

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Posted 28 May 2009 - 12:12 PM

Jenji, do you know if having all three markers makes it that much worse?

I mean, is it like:
1) 1,2, or 3 markers make no diff. you got one and it's the same no matter what
2) each additional marker makes it that much worse. say if there's 2, then twice as bad, or 3 then it's thrice as bad.
3) geometrical progression with each addtional marker.
or 4) one marker could mean cataplexy, the other could be paralysis? I guess that last one doesn't make sense.

and yeah, how do we get this test? is it just a blood test?

#11 dogdreams

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Posted 29 May 2009 - 09:56 AM

If I remember my literature correctly, more genetic markers increases your risk of getting N but doesn't necessarily have an effect on the symptoms once you get N. Make sense? Also, some of these genes can cause more than one disease. DQB1*0301 is an N gene and a Celiac gene...so I guess it gets complicated because people don't always have both or either. It takes a few specific combinations of genetic mutations to cause the disease and all the mutations have to be activated first. Genetics (the study of what genes you have in your DNA) is sooooo much easier than Epigenetics (how, why, and when the genes get turned on and what they do once they're on.)

Stanford's latest paper is interesting because it shows just how complicated N is...you have one mutation link up with another mutation to cause this craziness we call N. And it's not just one possible HLA mutation and one possible TCR mutation...it's several kinds of HLA/TCR combinations that can cause N.

#12 Irishhh

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Posted 30 May 2009 - 12:25 AM

QUOTE (dogdreams @ May 29 2009, 10:56 AM) <{POST_SNAPBACK}>
If I remember my literature correctly, more genetic markers increases your risk of getting N but doesn't necessarily have an effect on the symptoms once you get N. Make sense? Also, some of these genes can cause more than one disease. DQB1*0301 is an N gene and a Celiac gene...so I guess it gets complicated because people don't always have both or either. It takes a few specific combinations of genetic mutations to cause the disease and all the mutations have to be activated first. Genetics (the study of what genes you have in your DNA) is sooooo much easier than Epigenetics (how, why, and when the genes get turned on and what they do once they're on.)

Stanford's latest paper is interesting because it shows just how complicated N is...you have one mutation link up with another mutation to cause this craziness we call N. And it's not just one possible HLA mutation and one possible TCR mutation...it's several kinds of HLA/TCR combinations that can cause N.


You should type up some literature for us all to read. You seem to have a good idea of what is going on with the genetics, at least a little better than me and probably lots of others on here. I loved learning about genetics in school, that was my favorite thing in biology classes.

#13 dogdreams

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Posted 01 June 2009 - 04:20 AM

QUOTE (Irishhh @ May 29 2009, 10:25 PM) <{POST_SNAPBACK}>
You should type up some literature for us all to read. You seem to have a good idea of what is going on with the genetics, ...

I do a lot of genotyping at work so, although I never considered myself to be a geneticist, it's kind of grown on me. lol

#14 too exhausted

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Posted 02 June 2009 - 04:44 AM

I am in the UK and I haven't found anything about Narcolepsy offically being an auto immune disease. I looked on Stanford website and the lastest publications were from 2002. I have been on holiday for a few weeks so sorry if I have missed where this information has been put on this website. Could you show me the link or the information. Thanking you.

#15 WillWork4Latte

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Posted 02 June 2009 - 08:02 AM

QUOTE (too exhausted @ Jun 2 2009, 04:44 AM) <{POST_SNAPBACK}>
I am in the UK and I haven't found anything about Narcolepsy offically being an auto immune disease. I looked on Stanford website and the lastest publications were from 2002. I have been on holiday for a few weeks so sorry if I have missed where this information has been put on this website. Could you show me the link or the information. Thanking you.


Here you go:
http://www.eurekaler...c-nia042809.php

#16 too exhausted

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Posted 02 June 2009 - 11:42 AM

Thank you.

#17 sleepless sleeper

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Posted 18 June 2009 - 03:54 PM

QUOTE (dogdreams @ May 29 2009, 08:56 AM) <{POST_SNAPBACK}>
If I remember my literature correctly, more genetic markers increases your risk of getting N but doesn't necessarily have an effect on the symptoms once you get N. Make sense? Also, some of these genes can cause more than one disease. DQB1*0301 is an N gene and a Celiac gene...so I guess it gets complicated because people don't always have both or either. It takes a few specific combinations of genetic mutations to cause the disease and all the mutations have to be activated first. Genetics (the study of what genes you have in your DNA) is sooooo much easier than Epigenetics (how, why, and when the genes get turned on and what they do once they're on.)

Stanford's latest paper is interesting because it shows just how complicated N is...you have one mutation link up with another mutation to cause this craziness we call N. And it's not just one possible HLA mutation and one possible TCR mutation...it's several kinds of HLA/TCR combinations that can cause N.


What's interesting about this is that u can have N and Celiac, but it's uncommon for a person to have N, MS, and/or Parkinson's (HeidiL debunks this - she had N and Parkinson's, but she is an uncommon *as in super* kind of gal). I was looking for something that dogdreams wrote regarding ddt, and found where she posted this info. What's sadly funny is that one day in the future, pre-med students will learn about this info in a intro to genetics class and laugh at us for being so confused about what will appear to them to be a "no brainer".

Thanks to your research, dd, and the many others that are doing the same, what is so elusive now will be common knowledge in the future.

#18 malachi777

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Posted 18 June 2009 - 06:42 PM

I took that HLA test....


Results- I am a male.


The idiots at the facility mixed up my paperwork. angry.gif

#19 sunrisemoon

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Posted 19 June 2009 - 03:50 AM

QUOTE (malachi777 @ Jun 19 2009, 09:42 AM) <{POST_SNAPBACK}>
I took that HLA test....


Results- I am a male.


The idiots at the facility mixed up my paperwork. angry.gif
So, you're saying you're not male? laugh.gif laugh.gif

#20 jenji

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Posted 19 June 2009 - 11:15 AM

"The idiots at the facility mixed up my paperwork"

of COURSE they did.

jenji