Irishhh

Autoimmune!

31 posts in this topic

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?

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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.

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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

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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*

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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.... :P

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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...

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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.

jenji

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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?

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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.

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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.

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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

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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.

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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.eurekalert.org/pub_releases/200...c-nia042809.php

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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.

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I took that HLA test....

Results- I am a male.

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

So, you're saying you're not male? :lol::lol:

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"The idiots at the facility mixed up my paperwork"

of COURSE they did.

jenji

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So, you're saying you're not male? :lol::lol:

I already knew I was male...In fact, the doctor told me that I was so masculine that he had to put me on estrogen shots to get my hormones leveled out. lol

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"The idiots at the facility mixed up my paperwork"

of COURSE they did.

jenji

Jenji, shhhhhhhhhhhh.... Don't tell anyone.

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Howdy! I'm so happy to have found you folks. I thought I was the only one for a long time. I managed to retire from UPS after 26 years, still with full-blown "N". It was the perfect job for me because I was always on my feet, never sitting down, and interactive. I thought the symptoms would improve with age, but it's gotten worse. I've tried a wide array of meds, but in the last year have given up playing in a symphony because I never know how I'm going to feel on rehearsal night. I find myself becoming more of a hermit now that I can finally sleep whenever I feel like it. I hate myself for being so groggy, lazy. I tell myself that I can persevere. Each day I promise myself to complete a small list of chores, but always end up letting myself down and feeling a lot of self-loathing. I hate having "N". Don't tell anyone that you have it. They will never trust you and think you're psychosomatic (hypochondriac). I had 26 years at UPS without a car accident or even a fender-bender. I believe that people with "N" are hyper-vigilant while engaged in certain activities. I managed to raise 3 fine kids, 2 foster children, work full-time and play in a symphony as well as Ragtime festivals, mostly without meds. Last weekend, I babysat my grandkids and not wanting to fall asleep, spent every moment on my feet, fighting sleep. It was a minute-by-minute miserable ordeal simply because I couldn't sleep whenever the need occured. I live a half-life. No one understands. My neurologist told me I had to take the meds, getting the prescription filled is another ordeal, not to mention the way the pharmacists looks at you, like you're some kind of drug-seeking meth addict. I have to drive to another city to pick up a hard copy of the prescription, take it to my pharmacy, then wait while the pharmacist calls the doc to verify, then told to come back days later after he gets approval. I prefer not to take the meds simply because of the embarassment I have to go through to get them. Besides, nothing works! I don't want to be wired, I don't want to be asleep. What works? Are there any new methods, medications?

Thanks for listening.

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Howdy! I'm so happy to have found you folks. I thought I was the only one for a long time. I managed to retire from UPS after 26 years, still with full-blown "N". It was the perfect job for me because I was always on my feet, never sitting down, and interactive. I thought the symptoms would improve with age, but it's gotten worse. I've tried a wide array of meds, but in the last year have given up playing in a symphony because I never know how I'm going to feel on rehearsal night. I find myself becoming more of a hermit now that I can finally sleep whenever I feel like it. I hate myself for being so groggy, lazy. I tell myself that I can persevere. Each day I promise myself to complete a small list of chores, but always end up letting myself down and feeling a lot of self-loathing. I hate having "N". Don't tell anyone that you have it. They will never trust you and think you're psychosomatic (hypochondriac). I had 26 years at UPS without a car accident or even a fender-bender. I believe that people with "N" are hyper-vigilant while engaged in certain activities. I managed to raise 3 fine kids, 2 foster children, work full-time and play in a symphony as well as Ragtime festivals, mostly without meds. Last weekend, I babysat my grandkids and not wanting to fall asleep, spent every moment on my feet, fighting sleep. It was a minute-by-minute miserable ordeal simply because I couldn't sleep whenever the need occured. I live a half-life. No one understands. My neurologist told me I had to take the meds, getting the prescription filled is another ordeal, not to mention the way the pharmacists looks at you, like you're some kind of drug-seeking meth addict. I have to drive to another city to pick up a hard copy of the prescription, take it to my pharmacy, then wait while the pharmacist calls the doc to verify, then told to come back days later after he gets approval. I prefer not to take the meds simply because of the embarassment I have to go through to get them. Besides, nothing works! I don't want to be wired, I don't want to be asleep. What works? Are there any new methods, medications?

Thanks for listening.

Welcome to NN! I think you'll be able to find some other methods here. Sounds like you've done very well so far, and you should be extremely proud of yourself for that!

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Howdy! I'm so happy to have found you folks. I thought I was the only one for a long time. I managed to retire from UPS after 26 years, still with full-blown "N". It was the perfect job for me because I was always on my feet, never sitting down, and interactive. I thought the symptoms would improve with age, but it's gotten worse. I've tried a wide array of meds, but in the last year have given up playing in a symphony because I never know how I'm going to feel on rehearsal night. I find myself becoming more of a hermit now that I can finally sleep whenever I feel like it. I hate myself for being so groggy, lazy. I tell myself that I can persevere. Each day I promise myself to complete a small list of chores, but always end up letting myself down and feeling a lot of self-loathing. I hate having "N". Don't tell anyone that you have it. They will never trust you and think you're psychosomatic (hypochondriac). I had 26 years at UPS without a car accident or even a fender-bender. I believe that people with "N" are hyper-vigilant while engaged in certain activities. I managed to raise 3 fine kids, 2 foster children, work full-time and play in a symphony as well as Ragtime festivals, mostly without meds. Last weekend, I babysat my grandkids and not wanting to fall asleep, spent every moment on my feet, fighting sleep. It was a minute-by-minute miserable ordeal simply because I couldn't sleep whenever the need occured. I live a half-life. No one understands. My neurologist told me I had to take the meds, getting the prescription filled is another ordeal, not to mention the way the pharmacists looks at you, like you're some kind of drug-seeking meth addict. I have to drive to another city to pick up a hard copy of the prescription, take it to my pharmacy, then wait while the pharmacist calls the doc to verify, then told to come back days later after he gets approval. I prefer not to take the meds simply because of the embarassment I have to go through to get them. Besides, nothing works! I don't want to be wired, I don't want to be asleep. What works? Are there any new methods, medications?

Thanks for listening.

You should be very proud of yourself working that long with no accidents. I too am a courier and was just invited to the NTDA Competition in Pittsburg for being one of the safest drivers in our company. I work for your only competition. My boss asked me how I have refrained from having accidents with my condition and I told her because I know my job and condition depends on it. If I have one accident, I know my license will be pulled and I will lose my job even if narcolepsy is not the cause. Mind you, I work 5 or 6 hours a day because I have restrictions. You my friend are an inspiration to me and you show me that I CAN'T, is not an option.

As far as dx, Provigil is extremely expensive but it did not help me. Speed is another drug, but I cannot take it due to tachycardia. Prozac helped me with cataplexy symptoms but not so much for narcolepsy. The only thing I can recommend is a nap every single day. You will feel so much better with sleep.

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