Sophia3 Posted January 14, 2008 Report Share Posted January 14, 2008 From NDRF site, this second segment is to feature Linda Smith. She says they mention dysautonomia and orthostatic intolerance. So do not be upset folks if they do not mention "POTS". All one needs to know is one as ANS dysfunction. And that word NEEDS to get out to doctors and the general public. Linda has no idea how it will be edited as she has not seen the tape.I am posting info here that was posted about the program.http://health.discovery.com/tv-schedules/s....x&start=20The following is quoted from their web site:"Mystery DiagnosisThe Woman Who Kept Falling DownTV-PGLittle Avry Conley of Texas has violent bouts of vomiting and diarrhea from the day he's born; doctors try to ease his symptoms, but they only get worse. Linda Smith experiences strange symptoms, including blackouts, after she hits puberty.Jan 28, 10:00 pm(60 minutes)Jan 29, 1:00 am(60 minutes)"Eastern Time is given above. Quote Link to comment Share on other sites More sharing options...
Rachel Posted January 14, 2008 Report Share Posted January 14, 2008 Thanks for sharing. I wish I had that tv channel!Rachel Quote Link to comment Share on other sites More sharing options...
wareagle Posted January 14, 2008 Report Share Posted January 14, 2008 Thanks for the info. Sophia. I don't get that channel either. Does anyone know it you can watch the episodes on line perhaps? This is exciting! Quote Link to comment Share on other sites More sharing options...
Mrs. Burschman Posted January 14, 2008 Report Share Posted January 14, 2008 I have Discovery Health, and I like "Mystery Diagnosis." Misery loves company, I guess. It's always nice to know that other people have weird health problems, too!Amy Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted January 14, 2008 Report Share Posted January 14, 2008 For those of you who don't know this, Linda Smith is the the founder (along with her husband Dan) of the National Dysautonomia Research Foundation (NDRF). Now I have to set my dvr to record it. Nina Quote Link to comment Share on other sites More sharing options...
morgan617 Posted January 14, 2008 Report Share Posted January 14, 2008 I don't have that channel either, this is when friends come in handy I guess.....thanks sophia! Quote Link to comment Share on other sites More sharing options...
Sunfish Posted January 14, 2008 Report Share Posted January 14, 2008 unless something has changed very recently i'm pretty sure the program can't be watched on the internet.i won't guarantee that i can do so for unlimited numbers of people, nor can i guarantee whether it would end up on video versus DVD (as i have a DVD recorder on order as a birthday/ christmas gift but it's not in hand nor have i figured out how to work it yet!) nor can i guarantee any sort of time line with my health status but - with all those disclaimers out of the way - i'd be happy to get copies to people who don't get the discovery health channel. i may be locked up (l'hopital...yes i need to post an update elsewhere) but it would be planned so i can have it scheduled to tape at home while i'm away.i was cable-less for most of my independant living years (with the exception of a few 3month deals that my roomies & i would splurge on for a treat) but my parents now have cable (didn't when i was growing up) so since i've had to move back in with them i get to share. in our area discovery health is part of the basic package (i know it's not everywhere) so particularly if the show is any good i'm happy to do what i can to get it to those who can't otherwise see it.as a non-POTS gal i'll be honest that - without having seen it - i'm potentially glad that it's not "just" about POTS or NCS but more generally OI/ dysautonomia as that doesn't exclude the rarer category i fall into. but that's another story for another day....i pop in on NDRF very sporadically these days but not at all often so thanks for posting the info here sophia. i be eager to see the program & REALLY hope that they do an okay job in the edit room!! personally i think i'd have a hard time signing on the dotted line for a program about me - health or otherwise - without knowing i'd get to see the edited product before it was shown to the world! melissa Quote Link to comment Share on other sites More sharing options...
yogini Posted January 14, 2008 Report Share Posted January 14, 2008 Yay! My DVR doesn't allow me to record more than a week in advance, so hopefully I'll remember. I wonder if there is a tech savvy person among us who knows how to post the video so that everyone could have access...I know people do this all the time on You Tube, don't ask me how.... I've watched the show once or twice. IMHO, they tend to overdramatize things sometimes, so I hope they do a good job and are factually correct! Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted January 14, 2008 Author Report Share Posted January 14, 2008 Sunfish, honey, you might get overwhelmed with responses for the tape!I also just pop in now and then to NDRF these days...really miss the OLD forum style and the old timers that disappeared into the sunset.I am also THRILLED it's going to be on dysautonomia and O.I. I CLEARLY have POTS but my doc has NEVER called it that...called it autonomic dysfunction from day one..and that is something even the stupidest docs 'might know about' even if they are not familiar with it.I remember when DATELINE actually used the word dysautonomia but 20/20 refused because it was not 'sexy enough' so they used "Chronic fatigue syndrome instead" ???Nina, thanks for 'splaining who Linda Smith is and about NDRF. I realize many here may not be familiar with her though sadly much of the great PAST information and Newsletters and stuff was lost in their upgrade. Too bad.Don't tv shows still offer show transcripts or tapes of shows or by now, DVD's? I don't watch Mystery Diagnosis except rarely. It can be a good show but their constant SUPER ZOOMING IN on a persons eyes or EYE is very bizarre production and annoying . Other than that, it's a great show. Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted January 15, 2008 Report Share Posted January 15, 2008 I suppose any information out there that spreads awareness is a milestone.It would be nice if it is more accurate but who is the audience? I would suppose doctors are not viewing it as much as regular people?I too will try to catch it!thanks for the news,tearose Quote Link to comment Share on other sites More sharing options...
JaneEyre9 Posted January 15, 2008 Report Share Posted January 15, 2008 Thanks for letting us know about this, Sophia!I saw a post on another message board about another "mystery diagnosis" which offered DVDs of a particular episode. According to the post, it sounded like the source was the mother of the patient on the show. Do you think Linda might be given a DVD of her show that she would be permitted to copy/share? Just an idea. I don't know her personally.Kristen Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted January 15, 2008 Report Share Posted January 15, 2008 I will have to make sure to watch! Thanks for the update! Quote Link to comment Share on other sites More sharing options...
Dawg Tired Posted January 15, 2008 Report Share Posted January 15, 2008 Usually you can order DVD's of the shows. They offer them during the show so I can't imagine you couldn't order from their website - but they aren't available until after the show has been aired. Quote Link to comment Share on other sites More sharing options...
biatecki Posted January 15, 2008 Report Share Posted January 15, 2008 Sunfish Thanks for that generous offer ..I know you have so much on your plate but if all other ways dont work ..ie contacting the producers and trying to get a copy ..I would be so very grateful to you if you could send me a copy of Lindas part of the program.In the meantime I`m canvassing all my friends in the hopes someone gets the discovery health channel...Thanks again for the offer ..Margaret Quote Link to comment Share on other sites More sharing options...
Roselover Posted January 16, 2008 Report Share Posted January 16, 2008 I'm going to put this info on my blog in case some of my non-POTS friends see it!Sadly - I don't have cable either so if anyone can record it and has the capabilities to share let me know! I'd love to see it! And share it!thanks for the info!!!Roselover Quote Link to comment Share on other sites More sharing options...
pat57 Posted January 27, 2008 Report Share Posted January 27, 2008 I'll be hoping to see it. The following is from the site, I also think its EST- I did not see it mentioned tho. an 28, 10:00 pm(60 minutes)Mystery DiagnosisThe Woman Who Kept Falling DownTV-PGLittle Avry Conley of Texas has violent bouts of vomiting and diarrhea from the day he's born; doctors try to ease his symptoms, but they only get worse. Linda Smith experiences strange symptoms, including blackouts, after she hits puberty.Jan 29, 1:00 am(60 minutes)Mystery DiagnosisThe Woman Who Kept Falling DownTV-PGLittle Avry Conley of Texas has violent bouts of vomiting and diarrhea from the day he's born; doctors try to ease his symptoms, but they only get worse. Linda Smith experiences strange symptoms, including blackouts, after she hits puberty. Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted January 28, 2008 Author Report Share Posted January 28, 2008 Remember it's tonight ...check local listings. I think it's 10pm EST but don't quote me. Quote Link to comment Share on other sites More sharing options...
Heartwillforever Posted January 29, 2008 Report Share Posted January 29, 2008 I just watched it and I think It was GREAT! It was very helpful!! It was almost like watching myself. Since it's on again at 1:00 I'm going to be taping it. I think it would help alot of my family and friends understand what Im going through.Wouldn't hurt for some doctors to watch it eather!lol Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted January 29, 2008 Report Share Posted January 29, 2008 I have it on DVR for the 1am showing tonight so I can watch it tomorrow or later in the week. Looking forward to it.Nina Quote Link to comment Share on other sites More sharing options...
pat57 Posted January 29, 2008 Report Share Posted January 29, 2008 I missed it. My program guide said it was on yesterday. At this point I think the guide was in error. Quote Link to comment Share on other sites More sharing options...
dezyrae2 Posted January 29, 2008 Report Share Posted January 29, 2008 Thanks for the tip on watching the show. It was awesome. I cant wait to show it to my family and friends cause i think it will make them realize the seriousness of this illness. I felt like i was watching myself especially the driving part. That same exact thing happened to me with my kids in the car. Kinda scary though a little like living it all over again. Thanks again Desi Quote Link to comment Share on other sites More sharing options...
worththewords Posted January 29, 2008 Report Share Posted January 29, 2008 I thought it was really good too. I called as many people as I could think of to tell them to watch. I tried to tape it but something got messed up so I think I'm missing a part. I forgot about the 1am airing. Maybe it will rerun sometime so I can tape it again for my family that missed it. I felt a little sad too. I would never wish this on anyone else so it was sad to actually see someone else that had been through it. I got so many calls and texts asking me why I am still in Florida and how do I survive since she decided to leave Florida for a cooler environment. Quote Link to comment Share on other sites More sharing options...
Poohbear Posted January 29, 2008 Report Share Posted January 29, 2008 For those interested, the segment will re-air on Discovery Health Channel, Mystery Diagnosis Saturday, Feb 2nd at 8pm Eastern time (7pm Central) and again at 11pm Eastern (10pm CST) and again on Sunday, Feb 3rd at 2:00am (1am CST). Quote Link to comment Share on other sites More sharing options...
Rachel Posted January 29, 2008 Report Share Posted January 29, 2008 A friend taped the program for me. I look forward to watching it. I'm glad to hear that it was a good show!Thanks for sharing the re-air times, Poohbear! I hope that a lot of people can watch this.Rachel Quote Link to comment Share on other sites More sharing options...
maryfw Posted January 29, 2008 Report Share Posted January 29, 2008 It was so powerful to see someone like us on TV. I was really touched. I miscarried my first child and then went into labor at 6 months with both of my children. Now I can see that there is a great possibility that my NCS contributed to these problems. I have watched mystery diagnosis before thinking that one day I would see my symptoms on the show before I new what I had...........and now I did.mary Quote Link to comment Share on other sites More sharing options...
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