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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

  • TheRealMikeHunt Q4: What other potential diseases/diagnosis were thrown around first? #Nchat -4:41 PM Nov 3rd, 2012
  • LawrenceChen Though first sleep doc had said he didn't believe I was waking all the time at night, because CPAP compliance says I kept my mask on #nchat -4:41 PM Nov 3rd, 2012
  • stridesagainstN @convergecollide @MiaRaven Then, one day you try to tell a joke and you just can't make your mouth work. Friend asks if you're drunk. #Nchat -4:41 PM Nov 3rd, 2012
  • catthoma @Sarah_hosey Welcome Sarah to our #nchat! Jump on in! -4:41 PM Nov 3rd, 2012
  • catthoma @mitdoc Thanks for joining Mark! #nchat -4:42 PM Nov 3rd, 2012
  • LawrenceChen Tried to get him to tell me what keeping my mask on all night had to do with whether I was asleep or awake...but he doesn't listen #nchat -4:42 PM Nov 3rd, 2012
  • stridesagainstN RT @TheRealMikeHunt: Q4: What other potential diseases/diagnosis were thrown around first? #Nchat -4:42 PM Nov 3rd, 2012
  • TheRealMikeHunt @catthoma @stridesagainstN Fair enough, but we still heart you a whole big bundle. #Nchat -4:42 PM Nov 3rd, 2012
  • catthoma @MiaRaven :-( My DNA test came back negative which is why it's being challenged as a diagnosis again. I know in my heart I have it. #nchat -4:43 PM Nov 3rd, 2012
  • mitdoc A3. A seizure disorder was consider first, even tried a seizure med, but to no effect. Sleep study was definitive. #Nchat -4:43 PM Nov 3rd, 2012
  • itsatragicomedy @stridesagainstN A3 I practically diagnosed myself when she said there was a term for what I experienced: cataplexy. #Nchat -4:43 PM Nov 3rd, 2012
  • MiaRaven @catthoma Ask him if your insurance will pay for HLA type DNA testing. Couldn't hurt to see? @stridesagainstn #nchat -4:43 PM Nov 3rd, 2012
  • TheRealMikeHunt RT @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 -4:43 PM Nov 3rd, 2012
  • convergecollide A4: mono, thyroid, anemia, and idiopathic hypersomnia. #nchat -4:43 PM Nov 3rd, 2012
  • mitdoc Meant to say A4, not A3. Sorry #Nchat -4:43 PM Nov 3rd, 2012
  • stridesagainstN A4: In my teenage years, I was Dx w/ depression. Took Prozac for a month and threw it away b/c I knew it wasn't that. I was sleepy! #Nchat -4:44 PM Nov 3rd, 2012
  • catthoma A4. Lupus, anxiety, depression, thyroid issues (I already had it though), making it up, that I was crazy & seeking attention #nchat -4:44 PM Nov 3rd, 2012
  • TheRealMikeHunt @mitdoc I had there sleep studies before they found out what the deal was. #Nchat -4:44 PM Nov 3rd, 2012
  • convergecollide @stridesagainstN @miaraven I definitely have a lot of anxiety over not knowing how my symptoms will change/progress in the future #nchat -4:45 PM Nov 3rd, 2012
  • MiaRaven @stridesagainstn So it is common? I had no idea. Been out of the doc loop for almost 8 years now. :( @convergecollide #nchat -4:45 PM Nov 3rd, 2012
  • lauramariee19 RT @stridesagainstN: @MiaRaven I srsly thought everyone got weak in the limbs and face when they laughed.How silly that sounds now! #Nchat -4:45 PM Nov 3rd, 2012
  • stridesagainstN @catthoma @MiaRaven It was discussed at the conf that they are finding more genetic markers for #narcolepsy. I don't know specifics. #Nchat -4:45 PM Nov 3rd, 2012
  • catthoma @TheRealMikeHunt @stridesagainstN *warm fuzzy* And one of these days we should go to a Broncos game and drink beer and forget our dx! #nchat -4:45 PM Nov 3rd, 2012
  • LawrenceChen A4: early on there was 'Dreamer' or ADD/ADHD, later it was depression (and still comes up) My nick is "The Dreamer" in other places #nchat -4:45 PM Nov 3rd, 2012
  • catthoma @MiaRaven @stridesagainstN For sure! I'm going to ask for a full blood panel instead of whatever my previous quack doc did... #nchat -4:46 PM Nov 3rd, 2012
  • MiaRaven @stridesagainstn Don't forget about the "she looks like she's on drugs/nodding from heroin" whispers. @convergecollide #nchat -4:46 PM Nov 3rd, 2012
  • LawrenceChen A4: Anemia, thyroid, testosterone were also things that came up. Still getting testosterone shots though. #nchat -4:46 PM Nov 3rd, 2012
  • TheRealMikeHunt A4. Vitamin D deficiency, too fat, too ugly, too fugly. #Nchat #thisisntallserious -4:46 PM Nov 3rd, 2012
  • mitdoc @stridesagainstN The problem with just using genetic markers is that it only says you are predisposed to N, not that you have it. #Nchat -4:47 PM Nov 3rd, 2012
  • stridesagainstN @convergecollide @MiaRaven I do, too, especially after I collapsed last year. Dang, man, so I DO have #cataplexy. #Nchat -4:47 PM Nov 3rd, 2012
  • LawrenceChen Was told that I'm giving blood AMA, because I'm anemic for a time after I've given blood. #nchat -4:47 PM Nov 3rd, 2012
  • TheRealMikeHunt @catthoma @stridesagainstN Nothing would make me happier #Nchat -4:47 PM Nov 3rd, 2012
  • catthoma @stridesagainstN @MiaRaven Really!?!? That would be HUGE breakthrough findings for us! #nchat -4:47 PM Nov 3rd, 2012
  • lauramariee19 A4: They thought that I was just staying up too late at night and not resting enough. #Nchat -4:47 PM Nov 3rd, 2012
  • TheRealMikeHunt @lauramariee19 @stridesagainstN @MiaRaven But how were you supposed to know? #Nchat -4:48 PM Nov 3rd, 2012
  • TheRealMikeHunt @MiaRaven @stridesagainstN @convergecollide that's not cool #Nchat -4:49 PM Nov 3rd, 2012
  • stridesagainstN @mitdoc Yep. I just thought it was interesting. Do you know specifics on what other genes were found? #Nchat -4:49 PM Nov 3rd, 2012
  • catthoma A4. cont. Oh and my first blood test that came back positive was B6 toxicity. Turns out that came from using Red Bull to stay awake #nchat -4:49 PM Nov 3rd, 2012
  • LawrenceChen Primary doc wasn't interested in become xyrem approved, so he wouldn't make N dx after making my C dx. #nchat -4:49 PM Nov 3rd, 2012
  • convergecollide A4 contd: my sleep study had some irregularities so first doc didn't think it fit dx criteria for N. 2nd doc thought it did. #Nchat -4:49 PM Nov 3rd, 2012
  • stridesagainstN @lauramariee19 Me, too, which was silly because I was asleep at 10:00 while my friends were still out having fun. #Nchat -4:49 PM Nov 3rd, 2012
  • catthoma Ok #nchat 'ers. I am going from computer to phone to head to a party... I'll ask Q5 and try to keep up via phone. Just head's up! -4:49 PM Nov 3rd, 2012
  • MiaRaven #nchat A4: Other DX's: "you might be having a mental breakdown" & the kicker: "Are u sure you're just not unhappy w/your marriage?" #nchat -4:50 PM Nov 3rd, 2012
  • mitdoc @stridesagainstN Not off the top of my head. #Nchat -4:50 PM Nov 3rd, 2012
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