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November 3rd, 2012 #Nchat

11/03/12

  05:46:00 pm, by The Dreamer   , 6273 words  
Categories: mSpew

November 3rd, 2012 #Nchat

  • stridesagainstN Q3: Who suggested the #narcolepsy diagnosis first, and how did you react? #Nchat -4:26 PM Nov 3rd, 2012
  • LawrenceChen That "First Timer" ribbon at an NN Conference...kept causing people to drag me back in and force me to participate. #nchat -4:26 PM Nov 3rd, 2012
  • MiaRaven Tweeps, I'm about to do a narcolepsy Twitter chat. You may want to mute me or the #nchat hashtag. -4:26 PM Nov 3rd, 2012
  • stridesagainstN @mavericksmeow @TheRealMikeHunt That's crazy! #Nchat -4:27 PM Nov 3rd, 2012
  • catthoma @stridesagainstN The doc said it was the only thing he could think of. I'm tiny. Super tiny. & I don't snore. So I laughed at him :) #nchat -4:27 PM Nov 3rd, 2012
  • TheRealMikeHunt @LawrenceChen I have had like 5 EEG's all negative but that doesn't seem to work for them #Nchat -4:27 PM Nov 3rd, 2012
  • mavericksmeow #Nchat a bunch of neurologists threw it around; thought they were crazy until the tests proved it and meds treated it -4:27 PM Nov 3rd, 2012
  • stridesagainstN @LawrenceChen How was that? I think I would have been put off by that. #Nchat -4:27 PM Nov 3rd, 2012
  • MiaRaven #nchat I'm Mia, 38, from Alabama. Dx'ed narcoleptic w/cataplexy 13 years ago. -4:27 PM Nov 3rd, 2012
  • convergecollide @TheRealMikeHunt it's the thing that they give u w: the "how likely are you to doze off in the following situation" ?s #nchat -4:28 PM Nov 3rd, 2012
  • TheRealMikeHunt @mavericksmeow Im sorry lady #Nchat -4:28 PM Nov 3rd, 2012
  • LawrenceChen A3: my primary....and "What's #narcolepsy?" #nchat -4:28 PM Nov 3rd, 2012
  • TheRealMikeHunt @itsatragicomedy did you get fired? #Nchat -4:29 PM Nov 3rd, 2012
  • catthoma Q3. It was never even suggested until my 1st sleep study came back abnormal w/ signs of #narcolepsy. Shocked, cried & did research #nchat -4:29 PM Nov 3rd, 2012
  • stridesagainstN @catthoma You don't have to snore, nor do you have to be overweight to have #apnea. But I felt the same way. #Nchat -4:29 PM Nov 3rd, 2012
  • TheRealMikeHunt @itsatragicomedy who doesn't, thank god I work from home now. #Nchat -4:29 PM Nov 3rd, 2012
  • MiaRaven #nchat A1: I had gotten very ill (pneumonia) and afterwards started noticing excessive sleepiness, then cataplexy. It freaked me right out. -4:29 PM Nov 3rd, 2012
  • LawrenceChen @stridesagainstN Turned out to be an amazing time, the later two were still good but not as good as that first time. #nchat -4:30 PM Nov 3rd, 2012
  • TheRealMikeHunt @convergecollide well that seems about as useful as rock for a pillow #Nchat -4:30 PM Nov 3rd, 2012
  • catthoma @stridesagainstN oh I know. But like not knowing anything about #narcolepsy. I also didn't know anything about #apnea except that. #nchat -4:30 PM Nov 3rd, 2012
  • TheRealMikeHunt @convergecollide AWW I see #Nchat -4:30 PM Nov 3rd, 2012
  • stridesagainstN A3: My primary doc sent me to a sleep specialist after a year of struggling with sleep aids. After 5 mins, he suggested #narcolepsy. #Nchat -4:31 PM Nov 3rd, 2012
  • TheRealMikeHunt RT @stridesagainstN: Q3: Who suggested the #narcolepsy diagnosis first, and how did you react? #Nchat -4:31 PM Nov 3rd, 2012
  • convergecollide A3: it had crossed my mind when I was researching EDS. But the first sleep Dr had dx me differently... #nchat -4:31 PM Nov 3rd, 2012
  • MiaRaven #nchat A1: It took me a bit over a year to get a doctor that didn't think I was crazy. One I saw actually recommended a mental hospital. -4:31 PM Nov 3rd, 2012
  • catthoma A3. After I did my research, I knew it was a right and I cried. For about 2 months straight wondering how I was going to handle it #nchat -4:32 PM Nov 3rd, 2012
  • TheRealMikeHunt @MiaRaven Bad times #Nchat -4:32 PM Nov 3rd, 2012
  • stridesagainstN @MiaRaven Was your #cataplexy severe from the start? I didn't even know I had it until the doctor told me that I did. #Nchat -4:32 PM Nov 3rd, 2012
  • convergecollide A3 contd: ...so I was still surprised when my new sleep Dr suggested it was really narcolepsy when he read my sleep study results. #nchat -4:32 PM Nov 3rd, 2012
  • LawrenceChen @TheRealMikeHunt I had my last EEG shortly after my Cataplexy diagnosis on May 15th, 2012. They were still looking for excuses. #nchat -4:32 PM Nov 3rd, 2012
  • catthoma @MiaRaven Been there! 'Don't you just think this is in your head?' Yeah... that's where dreams usually come from! Ugh. Quack Docs... #nchat -4:32 PM Nov 3rd, 2012
  • MiaRaven #nchat A2: I figured out narcolepsy on my own, using the AOL search engine. Yes, I am dating myself. Google didn't exist. -4:33 PM Nov 3rd, 2012
  • stridesagainstN @catthoma Same here. It's a tough pill to swallow. #Nchat -4:33 PM Nov 3rd, 2012
  • TheRealMikeHunt A3. My family talked me into Getting a sleep study. I just assumed I had a vit D problem. #Nchat -4:33 PM Nov 3rd, 2012
  • lauramariee19 A3: After reading about it, I went about convincing my parents that I had it, and then my primary doctor. #Nchat -4:33 PM Nov 3rd, 2012
  • catthoma A3. I was dx in April 2012... now the new doc I just saw is questioning it all. So I get to start over w/ testing. Joy! #nchat -4:33 PM Nov 3rd, 2012
  • TheRealMikeHunt @mavericksmeow @stridesagainstN I can see how that would become a serious issue #Nchat -4:34 PM Nov 3rd, 2012
  • LawrenceChen Wasn't until after my first NN conference that I shared that I was having HH, SP, etc. with my sleep doc. #nchat -4:34 PM Nov 3rd, 2012
  • MiaRaven #nchat A2: Once I figured out what it might be, sought sleep specialists. Initial sleep tests inconclusive due to being allergic to adhesive -4:34 PM Nov 3rd, 2012
  • TheRealMikeHunt @LawrenceChen that sux man #Nchat -4:34 PM Nov 3rd, 2012
  • catthoma @stridesagainstN Indeed. I still get the weepies every now & again. I cried all day when the new doc said he wants to start all over #nchat -4:34 PM Nov 3rd, 2012
  • stridesagainstN @lauramariee19 How did your parents react when you told them you thought you had #narcolepsy? #Nchat -4:35 PM Nov 3rd, 2012
  • itsatragicomedy @TheRealMikeHunt I was 19 back then and only to begin my training, but I guess it was one of the reasons they let me go, yes. #Nchat -4:35 PM Nov 3rd, 2012
  • TheRealMikeHunt @stridesagainstN @catthoma I still cant deal with it all the time #Nchat -4:35 PM Nov 3rd, 2012
  • catthoma @lauramariee19 Isn't it crazy that we all know what we have from our own research & have to convince the docs we're right? backwards. #nchat -4:35 PM Nov 3rd, 2012
  • MiaRaven #nchat A2: Finally found a dr that specialized in narcolepsy 200 miles away, traveled there, he recommended HLA DNA testing. Bingo! -4:36 PM Nov 3rd, 2012
  • stridesagainstN @MiaRaven That's awful! My first PSG was inconclusive too because I didn't get enough sleep at night. Hello! That's half my problem! #Nchat -4:36 PM Nov 3rd, 2012
  • catthoma @TheRealMikeHunt @stridesagainstN Agreed. I bet I cry myself to sleep about it at least once a week... #nchat -4:36 PM Nov 3rd, 2012
  • TheRealMikeHunt @itsatragicomedy bunch of jerks!!! #Nchat -4:37 PM Nov 3rd, 2012
  • stridesagainstN @TheRealMikeHunt @catthoma Can anyone? Had two cry-fests myself this week. #Nchat -4:37 PM Nov 3rd, 2012
  • MiaRaven @stridesagainstn It started out light, thought it was weakness from being so ill. My first full collapse was the wake up call. #nchat -4:38 PM Nov 3rd, 2012
  • catthoma @stridesagainstN @TheRealMikeHunt At least I'm 'normal' in the #narcolepsyfamily! :) Honestly makes me feel better... #nchat -4:38 PM Nov 3rd, 2012
  • TheRealMikeHunt @catthoma @stridesagainstN Hey, you got us now. No more tiers! #Nchat -4:38 PM Nov 3rd, 2012
  • catthoma @TheRealMikeHunt Ready for Q4? #nchat -4:38 PM Nov 3rd, 2012
  • mitdoc Hi, I'm Mark, a pediatrician and father of a 23 yo daughter with N/C. She was dx'd in 2004. #Nchat -4:38 PM Nov 3rd, 2012
  • stridesagainstN RT @catthoma: @stridesagainstN @TheRealMikeHunt At least I'm 'normal' in the #narcolepsyfamily! :) Honestly makes me feel better... #nchat -4:38 PM Nov 3rd, 2012
  • MiaRaven @stridesagainstn I know, right? Had whelps from the adhesives/latex all over my body, looked like chicken pox. What did they expect? #nchat -4:38 PM Nov 3rd, 2012
  • Sarah_hosey Blaah, I was diagnosed with narcolepsy w/ cataplexy in March of this year. My doctor has changed my meds 3 times so far, ugh. #nchat -4:39 PM Nov 3rd, 2012
  • TheRealMikeHunt Are we all caught up to Q3 before I ask Q4? #Nchat -4:39 PM Nov 3rd, 2012
  • convergecollide @MiaRaven @stridesagainstn do y'all know if it's common to develop cataplexy later than the other symptoms of #narcolepsy? #nchat -4:39 PM Nov 3rd, 2012
  • TheRealMikeHunt RT @catthoma: @stridesagainstN @TheRealMikeHunt At least I'm 'normal' in the #narcolepsyfamily! :) Honestly makes me feel better... #nchat -4:39 PM Nov 3rd, 2012
  • TheRealMikeHunt RT @catthoma: @TheRealMikeHunt Ready for Q4? #nchat -4:39 PM Nov 3rd, 2012
  • convergecollide @MiaRaven @stridesagainstn I always wonder what the chances are that I will develop it. #nchat -4:39 PM Nov 3rd, 2012
  • stridesagainstN @MiaRaven I srsly thought everyone got weak in the limbs and face when they laughed.How silly that sounds now! 1st collapse last year.#Nchat -4:39 PM Nov 3rd, 2012
  • catthoma @MiaRaven @stridesagainstN Yikes I still can't get a straight answer from my doc if I have it. He said if I do it's an a-typical type #nchat -4:40 PM Nov 3rd, 2012
  • TheRealMikeHunt @mitdoc Welcome Mark! #Nchat -4:40 PM Nov 3rd, 2012
  • LawrenceChen I thought when I go the #cataplexy dx that I was finally there, but still couldn't get the #narcolepsy dx. 5 out 5 wasn't enough? #nchat -4:40 PM Nov 3rd, 2012
  • TheRealMikeHunt @Sarah_hosey Welcome Sarah #Nchat -4:40 PM Nov 3rd, 2012
  • catthoma @TheRealMikeHunt @stridesagainstN Ha. Love ya all but that doesn't stop the tears as the clock hits 10pm & my sleep anxiety sets in! #nchat -4:40 PM Nov 3rd, 2012
  • MiaRaven #nchat A3: The DNA test did all the diagnosis along w/cataplexy. I was ia sack of misery for about 6 mos, knew life changed forever. #nchat -4:41 PM Nov 3rd, 2012
  • stridesagainstN @convergecollide @MiaRaven It absolutely is common. You can even have it mild and not even know. #Nchat -4:41 PM Nov 3rd, 2012
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