"Mystery Diagnosis" TV show

    • Anonymous
      September 20, 2007 at 5:46 pm

      Hi Everybody~!

      There was a post here a few months ago regarding a TV show that wanted to talk with a person in New York that had GBS. I responded, and it turns out that they ended up doing an episode on my GBS experience. The show airs on Discovery Health (with repeats on TLC) and is called “Mystery Diagnosis”. I had posted a month or so ago asking what issues I should bring up in my interview. Well, everyone involved with producing my episode has been super nice, the interviews went great, and most of the principal filming has been done. It should air sometime around November; I will keep everyone updated. It will be a half-hour part of an hour-long show.

      Hopefully it will be good exposure for GBS and will teach people about some aspects of the GBS “experience”!

      Bill

    • Anonymous
      September 20, 2007 at 6:09 pm

      Bill,

      Thank you for keeping us updated, I have to admit that I forgot all about it so I’m glad you brought it up. Please do let us know when the episode airs, because, knowing me ๐Ÿ˜ฎ (or my seive brain)I will probably forget to look in November.

    • Anonymous
      September 21, 2007 at 5:26 am

      Please do let us know when it airs – I’ve been looking for something people can watch to get a better understanding. I hate that you had to get sick to get your 30 minutes of fame but I am SO happy they are airing an episode on it!

      Woo Hoo! A TV star in our midst! ๐Ÿ˜€

      Julie

    • Anonymous
      September 21, 2007 at 8:53 am

      How exciting! Looking forward to seeing that.

    • Anonymous
      September 23, 2007 at 10:23 am

      Dear Bill,

      Glad you made the show!!

      In 2005, I went through the processes of being on Mystery Diagnosis too. I told the Story Director that it would be a true story; my story about my experience with GBS, then CIDP, and there would be no sugar coating.

      I wrote my story, and the edited version was my wife and I was living happily ever after…NOT TRUE. PLUS I talked to all the doctors before she did, and explained this was going to be a true story, regardless of what their medical records showed (all four of my primary doctors misdiagnosed me)…And I did not get treatments of either IVIG or plasmapheresis, even when I became “totally paralyzed” and had to have a tracheotomy with a respirator to breath. Then, about two years later self-diagnosed my CIDP but didn’t get help from my doctors. I finally made an appt with a University Hospital, and they diagnosed me CIDP, and started IVIG therapy.

      I was told “everything was a go”, but then did not hear anything for over a month (this was early Oct). So I called the Story Director and was told my story was put on hold because of their budget, but they had my story on file and if their budget allowed them to travel (I live in so Indiana – 13 mi NE of Louisville, KY) they would keep me in mind.

      My guess – my story had too much truth of “what went wrong”, and the doctors may have influenced them not to produce…it wasn’t sugar coated. But that’s just my opinion.

      Keep us informed. I will be looking forward to see you and your story, and what GBS information is released.

      Best regards.

      Jethro

    • Anonymous
      September 23, 2007 at 11:11 pm

      Hello Bill,
      I would be interested in watching it, but I’m hoping you will up-date us with a date. I’ll even miss a favorite TV show if it’s on at same time ๐Ÿ˜€

      What part of New York are you from?

    • Anonymous
      September 24, 2007 at 12:37 am

      Jethro,
      I think that not only did they not want any hint of the doctors not being on top of things, but they also like to have a happy ending. Like now the patient is back to normal type of thing. Just like House where every episode the patient is near death, but once he figures out what they have, boom, they are just fine again. I just wish all of our stories ended that way!

    • Anonymous
      September 24, 2007 at 5:27 pm

      ditto everyone else. . .

      I do want to say that if this progam will help to raise the awareness of GBS perhaps it’s better than nothing.

      Do I say “break a leg” or is that just for live theater ๐Ÿ˜€

    • Anonymous
      September 24, 2007 at 10:27 pm

      Dear GBS Friends,

      I did not mean to downplay Bill’s GBS story on Discovery Health’s “Mystery Diagnosis.” I am very excited about the show and I’m really looking forward to watching it, because I know it’s something I can completely understand and relate with.
      [QUOTE]Hopefully it will be good exposure for GBS and will teach people about some aspects of the GBS “experience”![/QUOTE] I totally agree with Bill.

      Regards to all.

      Jethro

    • Anonymous
      September 24, 2007 at 11:29 pm

      Hello Jethro,
      I think we know that you did not intend to downplay Bill’s story. If they were doing the TV Show on CIDP instead of GBS, even though I am a success, whereas I am no longer progressing, they would not want my story because I am not that “happy healthy ever after” ending they’d want. Plus, I would have to be negative about at least three of the neuro’s I’ve seen.

    • Anonymous
      September 27, 2007 at 10:50 am

      Yes please keep us updated – I can’t wait to watch. I love the show, I like to sit there and figure it out before they say what it was. There was a woman on with MS. I cant believe how long it took for docs to figure it out!

    • Anonymous
      October 2, 2007 at 7:44 pm

      If anything, my guess is that they wanted a story with a happier ending. I doubt a negative opinion toward doctors had much to with it. I mean, that would just make the story have that much more drama and scandal, which the television shows love. People love to criticize doctors. Furthermore, I don’t think the doctors have much power over that kind of thing – I doubt THEY had anything to do with the episode being put on the backburner.

    • Anonymous
      October 3, 2007 at 8:41 am

      Power over what kind of thing (doctors). The thing with mystery diagnosis is it IS a mystery b/c docs are missing something etc. Which many docs do with GBS. There is a large chunk here who were misdiagnosed, including myself.

    • Anonymous
      October 4, 2007 at 11:48 pm

      Power over what goes kinds of stuff are on TV. Doctors have none – studio execs have lots.

      True doctors misdiagnose GBS all the time. My mom (also a doc) and my uncle (doctor too) both misdiagnosed me, as well as the first doc I paid to see. However, after seeing how MANY diseases present with fatigue, weakness, parasthesia, numbness, and how little about GBS is taught in med school, I can understand why it happens.

    • Anonymous
      October 10, 2007 at 11:54 pm

      SUPER WOW,
      I will defininely make it a point to watch that. As everyone else in this forum should. Success stories are just as important as people who are still struggling.

    • Anonymous
      October 10, 2007 at 11:58 pm

      Time, Channel & Date Once Again, Puuuleeese. The Success Stories As Well As The The People Who Need More Attention Need More Attention. T

    • Anonymous
      October 11, 2007 at 11:19 am

      [QUOTE=annie]Time, Channel & Date Once Again, Puuuleeese. The Success Stories As Well As The The People Who Need More Attention Need More Attention. T[/QUOTE]

      Hi Annie~! I’m sorry, I don’t know the exact time and date yet, but as soon as they tell me, I’ll post it here. I know it is shown first on Discovery Health, with repeats sometimes shown on TLC, I believe.
      Bill

    • Anonymous
      November 5, 2007 at 10:59 am

      Bill,

      Have you found out when the Mystery Diagnosis is going to air yet?

      Thanks,

      Sabrina

    • Anonymous
      November 7, 2007 at 3:13 pm

      [QUOTE=ssalin02]Bill,

      Have you found out when the Mystery Diagnosis is going to air yet?

      Thanks,

      Sabrina[/QUOTE]

      Hi Sabrina~!

      No, unfortunately they haven’t told me when it will air yet. I’m going to write to the producer and ask him again.

      However, on the “MD” website, they have an upcoming episode guide. On December 17, it says they are airing an episode titled “A Case of Paralysis”. I’m thinking that’s probably me ๐Ÿ™‚ Unlike the other episodes, there is no little capsule description of it, hopefully they will put that up soon.

      I’ll keep everyone posted when I receive a definite air date. Hopefully it won’t be too embarrasing to me, since you’ll all be watching~! lol

      Bill

    • Anonymous
      November 7, 2007 at 6:58 pm

      Thanks for keeping us updated. Yes, Bill, your ears are sure to be burning while we laugh or cry WITH you.

    • Anonymous
      November 7, 2007 at 7:35 pm

      Bill,
      [QUOTE]However, on the “MD” website, they have an upcoming episode guide. On December 17, it says they are airing an episode titled “A Case of Paralysis”. [/QUOTE] I typed in “www.MD.com” but did not get anything on programing scheduling or channels. What dish channel will this be on?

      Thank you.

      Jethro

    • Anonymous
      November 12, 2007 at 11:38 am

      Hi,

      What an interesting discussion…you are right, Jethro. I am sure they edit things because they think they know what the public can and cannot handle. Can’t make those doctors look bad, can we? ๐Ÿ˜ฎ

      Good to know that at least they are considering discussing the topic. Maybe Oprah will someday, especially when the convention is in her home town next year.

    • Anonymous
      November 12, 2007 at 3:20 pm

      [QUOTE=Jethro]Bill,
      I typed in “www.MD.com” but did not get anything on programing scheduling or channels. What dish channel will this be on?

      Thank you.

      Jethro[/QUOTE]

      Hi Jethro~
      I’ve put the direct link to the Mystery Diagnosis episode listings web page below. It LOOKS like mine might be the December 17th episode, but there is still no description listed, unfortunately.
      I used to get Direct TV but don’t anymore; I don’t remember what channel Discovery Health is on, but my dad has Direct TV, so I can ask him and post it. I never got Dish Network so I’m not sure about that one. My local cable network that i *do* get, doesnt carry it~! ๐Ÿ™

      [HTML]http://health.discovery.com/tv-schedules/series.html?paid=62.14341.120601.29206.x[/HTML]

      Bill

    • Anonymous
      November 12, 2007 at 7:18 pm

      Discovery Health on my DirecTV in Chicago is 279. I know that without looking it up because it’s my favorite station. ๐Ÿ™‚

    • Anonymous
      November 26, 2007 at 6:09 pm

      Just to let those interested know, I’ve definitely confirmed that the episode of “Mystery Diagnosis” dealing with my case of GBS in 1995, will air December 17 at 10pm, on Discovery Health. It will repeat later that night at 1am, and then again December 22 at 7pm.

      There are usually 2 “cases” per show, a half-hour each; I don’t know if mine will be first or second. There is still no capsule description of that episode on the Discovery Health website.

      Hopefully it will be educational for the “general public” regarding GBS. I haven’t seen the final, edited show yet, so I am nervous about how I will come off, lol, but hopefully it will be fine~!

      Bill

    • Anonymous
      November 26, 2007 at 8:58 pm

      when is it gonna be on again..i couldn;’t watch it..i’ve got a big dish, and last sunday they played on like the west feed, and i get the east..go figure..

    • Anonymous
      December 1, 2007 at 6:50 pm

      Hi Bill,
      I havn’t been on here since the middle of september so i didn’t realize they had followed up with your story. So glad I could be of help getting people connected. Daniel was great when I talked to him and very interested so I am glad he followed thru. Can’t wait to watch. Congratulations

      Sherry Price OHIO
      aka: Stormy

    • Anonymous
      December 3, 2007 at 1:25 pm

      Anyone know when or where this will be on in Canada?? I have this channel but it seems to show different stuff than the US station.

      Thanks

    • Anonymous
      December 6, 2007 at 5:49 pm

      Hey Guppy…Can I have your autograph?!?LOL Awesome deal for getting the word out…can’t wait to see it!!!

      Peace, Dave

    • Anonymous
      December 7, 2007 at 5:33 pm

      This would be really great, its actually one of my greatest frustration when a friend ask me what my illness was and I answer “GBS” and you could see in their eyes that they have no clue what it was they cant even sympathize, its not like if I answer them I had a fever or flu, they would quickly react and could quickly see concern in their eyes.

    • Anonymous
      December 17, 2007 at 1:54 pm

      The program is on tonite….Discovery Health, 10 pm Eastern-7 pm Pacific!@!!! I can’t wait!!!

    • Anonymous
      December 17, 2007 at 5:29 pm

      i’ve called everyone and told them to watch…can’t wait..this is just like christmas..:D

    • Anonymous
      December 18, 2007 at 7:36 am

      Ug !

      I missed it ! Will it be repeated ????

    • Anonymous
      December 18, 2007 at 8:06 am

      It was good to see your story on T.v. last nite.I thought it was well done, and informative..good job..deanop…

    • Anonymous
      December 18, 2007 at 2:57 pm

      Hi, thanks to everybody who commented! I hope you all enjoyed it. It is definitely strange seeing yourself in a half-hour TV episode~!, but I think it came out okay. It seemed to cover the basics of GBS pretty well, I thought.

      It was the first time I had seen the fully edited story….and my story was presented very accurately. I’m glad they gave my daughter Emily a little screen time at the end ๐Ÿ™‚

      It is airing again Saturday December 22nd at 7pm, and 2:00am.

    • Anonymous
      December 19, 2007 at 9:53 pm

      Kudo’s to you Bill…It was great..I had a hard time watching it because it kind of gave me flash backs but you couldn’t drag me away from the screen. I am so glad they followed thru with the program and that it turned out so well. Glad to see the family lookin good.

      Hooray for us!!!!

    • Anonymous
      December 19, 2007 at 11:36 pm

      Because I cannot get Discovery Health, but do get the TLC channel and someone said it was gonna re-air on that station ? Please let me know if someone knows the date and time of that. I would love to see it, but better yet to get others to watch it. Thanks for letting us know.
      I will be checking in everyday now.
      Gob bless,
      Drummer

    • Anonymous
      December 20, 2007 at 1:13 pm

      Good stuff Bill!!! I think you have a future in the movies!!!!! Thanks for your service to the GBS community, and helping public awareness of this misunderstood disorder!

    • Anonymous
      December 20, 2007 at 6:46 pm

      Well I missed it too, but my parents saw it and thought it was great! I’ll try to watch it this weekend…Gabrielle

    • Anonymous
      December 21, 2007 at 10:49 pm

      Bill, you were great, even the fall getting out of bed, you have potential as an actor. Was nice to meet your family and see a happy ending. I couldn’t get it on my tv,but my daughter copied it and now I have it to show to others, especially my granddaughter who is in medical school and will be visiiting for Christmas. In one of her small study classes they had to make a DX of a disease which she made right away, MG (myasthenia gravis). when she was 16 visiting me in ICU at MT. SINAI HOSPITAL, NYC, with her parents, she remembered the symptoms. Now she will be prepared to DX GBS.

      Merry Christmas and Happy, Blessed New Year to you and your family. Thanks for bringing GBS on national TV.

      Peg Hinz

    • Anonymous
      December 22, 2007 at 10:41 am

      I can’t believe I missed it! Hopefully, I’ll remember to watch it tonight! I’ve been reading and listening to music a lot and haven’t been turning on the TV!

      –Shannon

    • Anonymous
      December 23, 2007 at 6:58 am

      I was amazed at your Mystery Diagnosis episode. Your progression through the disease was so like mine (flu like symptoms, etc.). It was encouraging to see that you are doing so well and that your major recovery occurred in a year. I am 7 months post dx and still have problems with my hands and arms (that’s where mine started). I hope I will some day be as well as you seem to be.

      It was delightful to see that you were able to carry on and start a family. Congratulations. I wish you and yours a very Merry Christmas and a New Year that sees you achieve everything you want, GBS free and clear!

    • Anonymous
      December 23, 2007 at 11:45 am

      Hello neighbor,
      I am in Suffolk county on Long Island and I have CIDP. I missed the first airing, but was able to watch on the 22nd. You seem to be doing very well now and what a nice touch to see your daughter at the end.

      Mystery Diagnosis would not have wanted my story because I am left with extreme residuals which make a sweet/bitter story. I would not have been the happy ending they’d want.

    • Anonymous
      January 17, 2008 at 10:33 pm

      [QUOTE]I am in Suffolk county on Long Island [/QUOTE]

      /Rocker misses summers at Hampton Bays

      ๐Ÿ˜Ž

    • Anonymous
      January 20, 2008 at 12:26 pm

      Bill,

      You did a great job!:)

      Jethro

    • Anonymous
      January 29, 2008 at 12:55 pm

      Hey Everybody~

      Thanks very much for the kind words about my episode. ๐Ÿ˜€

      For those that missed it, it will be on Discovery Health channel Monday [B]February 18 at 10:00pm[/B], later that night at 1:00am. Then [B]Saturday February 23 at 7:00pm[/B], and again later that night at 2:00am.

      Liz (codystanley)–howdy neighbor ๐Ÿ™‚ I actually have pretty bad residual pain in my legs–I started seeing a new pain management doctor/neurologist last April and the new medicine has been helping. They just didn’t want to mention that at the end of the episode to ruin a good story ๐Ÿ™‚ But I’m glad that they managed to get that footage of my 2 year old daughter Emily in there

      Thanks again everyone
      Bill

    • Anonymous
      February 18, 2008 at 1:03 am

      Hi everybody~~

      I hope you all won’t think i’m being egotistical or anything, lol, but I wanted to bump this thread because I know some people here said they wanted to see it originally and missed it—the “[B]Mystery Diagnosis[/B]” episode dealing with my GBS case in 1995 is on again tonight (Monday Feb 18) at 10pm EST on the Discovery Health channel. It’s the second story (so it starts half-hour into the episode).

      I think they did a pretty good job of explaining GBS to the “layperson”. Thanks for all the kind comments of the people that did see it back in December—
      Bill

    • Anonymous
      February 18, 2008 at 9:47 pm

      THANK YOU!!! I am changing the channel right now ๐Ÿ™‚

    • Anonymous
      February 18, 2008 at 11:11 pm

      Bill,
      Great job! I have CIDP. After watching the show, I think my wife has a better understanding about what going on. Thanks for the hard work. Again you did a great job helping others understand what going on.

    • Anonymous
      February 19, 2008 at 2:23 pm

      I always have watched Mystery diagnosis and after my gbs I wondered if they ever would do an episode. I was sitting in my room with my sister and was unknowingly watching your episode. At the same time I was telling my sister how I would love to see it. I was listening to your symptoms and I was thinking that sounds like gbs. When the diagnosis was gbs I was shocked. Wow please respond. i have yet to tell my story, but I soon will. Take care all.

    • Anonymous
      February 20, 2008 at 12:34 pm

      I’m Going To Try To Catch This Showing On Saturday. Hopefully It’s On Direct Tv Satellite Service.

    • Anonymous
      February 20, 2008 at 1:39 pm

      Did Some Research And Found It At 4:pm Pacific Standard Time, 23rd Feb On Channel 279 On Direct Tv

    • Anonymous
      November 12, 2008 at 12:43 am

      I got to see you tonight on TLC channel on cable tv. You did a great job. I see it is almost a year since you posted on this thread and was wondering if your legs are still causeing you much pain ? I got GBS several years ago and have been disabled since, even tho I take a bucket full of meds. I took nothing before I got sick.
      Bill, your little girl is a beauty. I have some older girls and they are a big help to me. Talk at you later Bill. lol ๐Ÿ™‚

      God bless,
      Drummer

    • Anonymous
      November 12, 2008 at 4:43 am

      I watch that show alot but I missed it! Drats! But I hope it will re-run again and I get to see it! That is a pretty good show. I really enjoy seeing that show. It helps me to know that I am not the only one that has had problems in getting a diagnoses. Although I am now diagnosed but boy was that hectic. But I know now that I am not the only one in the world that has problems and when I see someone finally getting diagnosed it makes me happy for them. Not fun being sick and then not getting any answers. Looking forward to hopefully seeing this show! Hugs
      lindah

    • Anonymous
      November 13, 2008 at 1:07 pm

      Thanks for the kind words ๐Ÿ™‚ Yyes, my legs still do hurt. I got GBS in 1995 and the pain has never really gone away. Of course, certain things really exacerbate the pain…I recently moved, and hauling boxes up and down staris repeatedly for 2 days made me practically unable to walk for a few days~!

      Thanks also for the nice words about my daughter. She was about 1 & 1/2 years old when that was filmed, she’s now 3.

      LindaH, I have a copy of the Mystery Diagnosis show on DVD….assuming it doesn’t violate any copyright laws, lol, if you want to shoot me a PM with your address I can send a copy to you ~!

      Best,
      Bill

    • Anonymous
      November 20, 2008 at 5:41 am

      Will it be on comcast cable if so what dig channel????thanks jim.And I thought if some one could get montels or dr phils or ophras phone email or address. we all could write them and may be this would help disability see some of us cant work. and bring more awareness to the prob hope we can pull together and get this done.. ๐Ÿ˜€ ๐Ÿ˜€

    • Anonymous
      November 26, 2008 at 1:50 am

      Hi,

      I missed it all and am interested in getting a copy of the DVD. What is a PM? I am terrible on initial reading. I will send you the amount of money needed to burn a copy, please let me know.

      thanks,

      Judy

    • Anonymous
      November 26, 2008 at 7:52 am

      Hi Bill! Just sent you a private email! I would really love to see the DVD! I watch that show alot! It really has some interesting stories! Thank-you so much!
      Happy Thanksgiving!

    • Anonymous
      November 26, 2008 at 11:06 am

      Hi Judy~!

      “PM”s are Private Messages sent directly to your mail in-box here at the GBS forum. I just sent you one; you can view it after you sign in by checking the upper right hand corner of the screen for your mailbox.

      Have a Happy Holiday~!
      Bill

      [QUOTE=judypaluch]Hi,

      I missed it all and am interested in getting a copy of the DVD. What is a PM? I am terrible on initial reading. I will send you the amount of money needed to burn a copy, please let me know.

      thanks,

      Judy[/QUOTE]

    • Anonymous
      December 8, 2008 at 8:32 pm

      Hi Guppy270,

      Did you get my message with my address in it. if not let me know. I didn’t know how to use the PM messages.
      Thanks,
      Judy