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DJ
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Discovery Channel Casting Call
« on: Jul 28th, 2005, 11:55pm » |
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Does this run-around sound familiar to some of you?? Time to make a phone call!
Did you spend years searching for a diagnosis before finding one? Did you see doctor after doctor, desperately looking for an answer to the question "what is wrong with me?" If so, your story may be of interest for the new Discovery Health Channel series Mystery Diagnosis.
You must:
have spent months or years searching for a correct diagnosis; seen multiple doctors and gotten multiple diagnoses; and have ultimately reached a diagnosis that both you and your physician are satisfied with. The eventual diagnosis doesn't have to be rare or complicated, but the "journey" to solving the mystery should be tricky.
If this situation sounds familiar to you, and you are eager to tell your story, contact Timothy Hedden, (212) 627-6053 x443
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Sean_C
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Re: Discovery Channel Casting Call
« Reply #1 on: Jul 29th, 2005, 12:01am » |
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Spent ten years, and finally met someone who diagnosed me in ten minutes  I lost ten years of my life thinking they were right, there's nothing wrong, its all in my head 
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Kirk
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Re: Discovery Channel Casting Call
« Reply #2 on: Jul 29th, 2005, 12:28am » |
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Now I just have to figure out where I left the phone.
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nani
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Re: Discovery Channel Casting Call
« Reply #3 on: Jul 29th, 2005, 12:38am » |
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Hmmm.... I wonder if 26 years of mis-diagnosis would be enough?
Thanks Deej. 
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Cerberus
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Re: Discovery Channel Casting Call
« Reply #4 on: Jul 29th, 2005, 12:39am » |
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sounds like Discovery Channel is got quite a bit of filtering to do real soon... hehe
Me
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Kevin_M
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Re: Discovery Channel Casting Call
« Reply #5 on: Jul 29th, 2005, 12:46am » |
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on Jul 28th, 2005, 11:55pm, DJ wrote:desperately looking for an answer to the question "what is wrong with me?"
the "journey" to solving the mystery should be tricky.
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We definitely have enough candidates here to get someone possibly featured.
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Lizzie2
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Re: Discovery Channel Casting Call
« Reply #6 on: Jul 29th, 2005, 12:56am » |
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Hmmmmmmmmm can we write them about more than one issue? LOL
I don't have any 'years of misdiagnosis' to report - but I did wait 11 months (and many rediculous comments and statements later) to get a diagnosis for my NDPH.
My clusters were just bypassed by my neuro at first because I do believe at the time he felt that I was just experiencing ice pick headaches that didn't need treatment. It wasn't until I had spent a couple of solid months with an hour of sleep a night and no abortives to speak of that I ended up in the hospital and got hooked up with O2 the first night I was there...finally!
My tumor when I was 16....now that one's a good story, actually! I went to a family doctor who used to work in the same office as my actual family doctor. This moron told me that I had an ingrown pimple and I should go home and put a warm compress on my face. A few months later, I went back, but to my regular doc. It had grown substantially since then. My family doc told me he thought it was a cyst and referred me to a dermatologist. I went to the dermatologist and he took a history of the bump that had grown from the size of a pimple to the size of a golf ball in 3 months time. He said, "I don't know what it is, but it is no cyst. And I think you should go to an ENT...NOW."
Went to the ENT who thought it still was a cyst until I explained what the dermatologist had said - then he took me a bit more seriously! Ordered a CT scan, and later told us that he wanted to make sure nothing was growing down from the brain. Removed the golf-ball tumor from the side of my nose (most of the mass was inward, so it didn't look TOO bad from the outside!), and when I went back a week later for the results, he told me that it was a benign tumor. He said when doing the surgery, the tumor was very solid, but fortunately encapsulated. It didn't hurt, which is always an ominous sign - and it was fixed...not movable. He said he was afraid he'd be sending me off to Sloan-Kettering for them to remove my nose.
Yeah...I was 16. I had nightmares for months after that about having no nose. 
Found out a little later that the tumor type I had grows from capillaries gone wild....it was a Lobular Capillary Hemangioma (shares the same name, but not the same thing as the hemangiomas or strawberry marks that are normal on infants). Apparently, this thing could have exploded at any time and been the death of me. This would explain the feeling of pressure build up and then release which would send me reeling with dizziness.
So....do you think they'd take that story? LMAO
Of course, on behalf of all of us here, I'd definitely start with sending them the cluster story!
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TxBasslady
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Re: Discovery Channel Casting Call
« Reply #7 on: Jul 29th, 2005, 1:55am » |
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Reckon they know what they're in for
Holy shit.....when Clusterville gets on there...they won't have a clue whether to scratch their ass, or pick their nose 
Might be interestin' 
J
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Jasmyn
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Re: Discovery Channel Casting Call
« Reply #8 on: Jul 29th, 2005, 5:06am » |
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We're gonna be on tv! We're gonna be on tv! We're gonna be on tv!  
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Jeepgun
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Re: Discovery Channel Casting Call
« Reply #9 on: Jul 29th, 2005, 6:43am » |
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Six years before I got diagnosed, here. 
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don
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Re: Discovery Channel Casting Call
« Reply #10 on: Jul 29th, 2005, 8:24am » |
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Hi DJ
Welcome to the family but sorry you have to be here. Have you taken the Cluster quiz on the left. Hugs prayers and vibes.
Who the fuck is DJ ?
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thomas
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Re: Discovery Channel Casting Call
« Reply #11 on: Jul 29th, 2005, 8:26am » |
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on Jul 29th, 2005, 8:24am, don wrote:Hi DJ
Welcome to the family but sorry you have to be here. Have you taken the Cluster quiz on the left. Hugs prayers and vibes.
Who the fuck is DJ ?
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You forgot....... READ,READ,READ!!!!!!!
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Jeepgun
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Re: Discovery Channel Casting Call
« Reply #12 on: Jul 29th, 2005, 8:39am » |
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ROFLMAO!!
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don
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Re: Discovery Channel Casting Call
« Reply #13 on: Jul 29th, 2005, 11:37am » |
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DJ
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Hmmm?
Het bud, if I paypal you some cash will you promise to buy a whole name. You know. One with vowels and shit in it?
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clarence
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Re: Discovery Channel Casting Call
« Reply #14 on: Jul 29th, 2005, 1:27pm » |
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I just called with that extension, and got somebody else's voicemail. I wonder if that is correct?
The message said that the guy was the producer for somthing like "who's funny anyway?" or something.
Also, what do you think someone should say on the message? Are we supposed to leave a message with our whole story on it? Or do you think contact info and a short description is fine?
Just wondering,
Casey
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clarence
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Re: Discovery Channel Casting Call
« Reply #15 on: Jul 29th, 2005, 1:31pm » |
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Just found an email addy:
diagnosis@true entertainment.net
Although, I think it is funny that our diagnoses are "true entertainment."
Casey
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Lizzie2
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Re: Discovery Channel Casting Call
« Reply #16 on: Jul 29th, 2005, 8:14pm » |
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on Jul 29th, 2005, 1:31pm, clarence wrote:Just found an email addy:
diagnosis@true entertainment.net
Although, I think it is funny that our diagnoses are "true entertainment."
Casey |
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Oh but they are!!!
Did you ever see "Trauma: Life in the ER" on discovery health? I feel like such a geek every time I sit down and watch that!! Trauma stories are so horrible sometimes, but yet...they attract lots of interest on tv!!
Although...showing CH on tv might just scare people instead. LOL
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cootie
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Re: Discovery Channel Casting Call
« Reply #17 on: Jul 29th, 2005, 11:35pm » |
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My mom is haveing some dizzy spells and was sent to a neuro doctor and they got to talking......he asked her about any migraines. She said no but mentiond her son in law had cluster headaches. The doc seem'd familiar with them and told her there is a new med out now that you take when the cycle starts and will keep it under control until the eye twitch stops. He told her they start when the eye waters and are called suicide illness.......say what ? Hmmmmmmm.......could this be more misdiagnoses in the workings ? Or miss-medicateing....whatever......at least the guy was 'close' but he's not gettin a cegar for that one. Wonder what the med was he was referring to that......the way he told her it was a new med that control'd them. At least he didn't mention green tea or asprin. Kinda rite kinda wrong clinic Pam
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Gator
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Re: Discovery Channel Casting Call
« Reply #18 on: Aug 1st, 2005, 9:43am » |
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on Jul 28th, 2005, 11:55pm, DJ wrote:Does this run-around sound familiar to some of you?? Time to make a phone call!
Did you spend years searching for a diagnosis before finding one? Did you see doctor after doctor, desperately looking for an answer to the question "what is wrong with me?" If so, your story may be of interest for the new Discovery Health Channel series Mystery Diagnosis.
You must:
have spent months or years searching for a correct diagnosis; seen multiple doctors and gotten multiple diagnoses; and have ultimately reached a diagnosis that both you and your physician are satisfied with. The eventual diagnosis doesn't have to be rare or complicated, but the "journey" to solving the mystery should be tricky.
If this situation sounds familiar to you, and you are eager to tell your story, contact Timothy Hedden, (212) 627-6053 x443 |
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Okay, so like, in 5 days only one person has done this? Or is only one person telling us he did? I don't meet the requirements (I was diagnosed very quickly) or I'd be on this like a chicken on a june bug. Let's get busy with this. If we won't help ourselves, why would anyone else want to help us?
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Ghost
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Re: Discovery Channel Casting Call
« Reply #19 on: Aug 1st, 2005, 10:03am » |
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on Jul 28th, 2005, 11:55pm, DJ wrote:Does this run-around sound familiar to some of you?? Time to make a phone call!
Did you spend years searching for a diagnosis before finding one? Did you see doctor after doctor, desperately looking for an answer to the question "what is wrong with me?" If so, your story may be of interest for the new Discovery Health Channel series Mystery Diagnosis.
You must:
have spent months or years searching for a correct diagnosis; seen multiple doctors and gotten multiple diagnoses; and have ultimately reached a diagnosis that both you and your physician are satisfied with. The eventual diagnosis doesn't have to be rare or complicated, but the "journey" to solving the mystery should be tricky.
If this situation sounds familiar to you, and you are eager to tell your story, contact Timothy Hedden, (212) 627-6053 x443 |
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Now new number to call is 212 247-4400 x136 amy ...
I cld other and was directed to there ...
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clarence
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Re: Discovery Channel Casting Call
« Reply #20 on: Aug 1st, 2005, 10:25am » |
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I just called the new number and got a hold of Amy. She was on the other line but said that she would call me right back. We'll see.
Casey
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Gator
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Re: Discovery Channel Casting Call
« Reply #21 on: Aug 1st, 2005, 10:34am » |
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Okay, that's two. It's going to take a lot more than this to catch anyone's attention.
Do it!
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clarence
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Re: Discovery Channel Casting Call
« Reply #22 on: Aug 1st, 2005, 10:54am » |
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I just got off the phone with Amy from Discovery Health. She is fantastic. We spent about 20 minutes talking about Cluster Headache. She was really interested in my story. She said that while it is a compelling story, it will porobably not be approved by the producers because I said that in my case Diagnosis was only the beginning of the journey. It took over a year to diagnose, and now I am in year 5 of treatment. They are looking for people that once treatment is happening, have experiencesd some kind of significant relief. I told her that pain wise, my relief is intermittent.
The greatest thing about diagnosis, I told her, is that one can put a name to the pain, and find this community here. I said that this community, in many instances, and not exagerating, is the difference between life and death. The greatest thing to come from diagnosis is being a part of this community. I told here that despite the hit and miss treatment options, the value of this site and the support here cannot be underestimated as a "great result" of diagnosis.
That said, she said that she is interested in people with rare illnesses because she, as someone working on this show, would like to raise awareness so that someone out there suffering alone would gain information and support.
MAybe if you fit the description above, and have found significant relief in treatment, you should give her a call. She chacked out this website as I was talking with her, and said that the info I gave her would be great if she spoke to any other clusterheads. She also said that she had spoken to 2 in the 10-20 minutes before I called.
I would say give her a call.
Casey
edit - Ghost, thatnks for the new number!
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| « Last Edit: Aug 1st, 2005, 10:59am by clarence » |
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BobG
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Re: Discovery Channel Casting Call
« Reply #23 on: Aug 1st, 2005, 11:07am » |
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I think every clusterhead here should call the number.
But, with cluster headaches there is no blood, guts or broken bones. There will be no high speed police pursuit. There are no earthquakes, mud slides or tornados. There is no racism, religious sides to take or politics involved. There will be no movie stars to mouth their expert opinions.
If, and it is a big IF, cluster headaches were televised the viewer would say.............
"Oh look, that whiney guy has a headache and can make tears run from one eye only. How cute. What channel is Cops on?"
Everyone call now if for nothing more than to tie up their phone lines and overload their message machine. I called it and left my message.
I'm sure they will call me back.
NOT!
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Ghost
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Re: Discovery Channel Casting Call
« Reply #24 on: Aug 1st, 2005, 11:10am » |
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Pretty much what she told me too and also they would need to speak to you doc to get there view of it ... If being diagnosed has cause a signigiant change in your life for the better and has made you condition more tolerable then deffinatly call her also hint if the imatrex or other med had helped and /or surgery has helped call her ... we need to get this out I was able to convince her to listen to cluster heads because she sd she needed more of a cureable illness ... I explained that if we can get this out and more docs and people understood about and more research was done for it there may be a cure ... so please call her if you are better because of being diagnosed.........
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