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Mystery Diagnosis Finally


Sophia3

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Maybe I'm just a dork, but did anyone else who saw the program cry? Maybe it is because I don't have a diagnosis yet... the program made me feel vindicated somehow. I wanted to jump up and down and shout "I'm not crazy!" My husband watched it with me and made the comment "the similarities between you and that woman are SCARY". Well YEAH, because we both suffer from the same type of problem! I think the program made him "get it" more than he did before. It was a good program. Too bad my doctor probably wasn't watching...

Mary

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It was really good?it brought back a lot of memories of the frustration of not having a diagnosis (though I didn't have to wait for 20 years), the scary episodes of feeling dizzy, weak, and the heart palpitations to the point of being disabled; it also did an excellent job of explaining what is wrong physiologically with someone with OI. My only criticism is that I didn't feel it showed enough of how totally disabling this condition can be. She managed to have 3 kids and you get the impression a relatively normal lifestyle, except for these admittedly terrifying and disabling episodes (I guess she has NCS).

The patient profiled had a 2nd trimester miscarriage in her 20?s, and after her diagnosis (in her late 30?s) the diagnosing doctor said that OI might have caused the miscarriage. That is the first time I have heard of any connection of OI to miscarriage. It seems questionable to me, to make that link, since there is so little understood about miscarriage and there are plenty of miscarriages in women without OI, and plenty of term births in women with OI. I think research is needed before anyone jumps to this conclusion.

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She had O.I. To someone who has had great difficulty with pregnancies it is not a definite answer but a definite possibility. When you think about it, it makes since. When my bp drops, then my body cuts off blood supply to what it deams as unnecessary parts of the body........digestion, etc and if the blood flow is cut of to the baby then that could be life threatening or at least cause complications.

mary.........Not saying this is what caused my problems but no doctor has ever been able to offer me any explanations other than "your body has had all it can take and therefore the pre-term labor".

mary

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Sorry Mary, I wasn't criticizing your statement at all. I was questioning the doctor's statement in the program. I think it was probably wrong for him to make that statement, as a physician, without some research or evidence to back it up. I understand what you are saying -- and I agree it sounds like it makes sense. I have several friends w/o OI who have had repeated 2nd trimester miscarriages, with of course, no explanation. It is horribly painful and so terrible that there aren't answers. I'm really sorry you have had to experience it. I definitely understand your need for answers.

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I didn't get to watch it yet--I'll do so tonight via my dvr-- BUT... just to clarify, Linda has more than just OI. She has a genetic variant of the norepinephrine transporter defect that makes some of her issues much more difficult. They may not have emphasized the more life threatening issues she's encountered. Can't wait to see the airing for myself.

Nina

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Aside from the fact I was HAPPY Linda could share her story on TV, I was disappointed they 'glossed over' so many things.

THEN, my house mate (He owns this house and allows myself and cats to live here) has known me 10 years and is sympathetic to my illness but said the show helped him.

He said what clarified it for him was the diagram on blood pooling, and explanation by dr. Robertson that helped immensely. Yay.

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I, too, thought it was well done. Knowing Linda, I know that her history of problems was actually a bit worse than they showed, especially regarding dismissive doctors and how difficult daily living tasks could be... BUT... I think that she and Dan did an awesome job explaining what was happening to her body, her symptoms and eventually, her treatment. Dr. Robertson's piece was good too. The more I thought about it, the more I concluded that if the show had spent too much time on all the history with doctors misdiagnosing and/or ignoring her symptoms, it wouldn't really help the story much and might have detracted to from showing the general public what Orthostatic Intolerance is, and how it's diagnosed. Hopefully Linda's story being aired has already helped a few folks who were watching and realized that the story rang true for them.

Nina

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i have it on tape too & as soon as i figure out how to use my new DVD recorder/ VCR gizmo i'd be happy to get DVD copies to those who would like one.

B) melissa

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I have two dvds, so am happy to give someone one.

I haven't had the migraine problem and am a bit sorry they focused so much on that aspect. It will make any doctors I have that watch it, question me even more, because it was stressed so much. Trust me, I know my doctors. I am also far more cold intolerant than hot. I kinda wish they would have just stressed we have temperature control problems, and hers was heat. It really sounds like I'm nit picking, but I don't mean to. I'm just glad they finally did something!!!!!

I know the majority of people here do have problematic migraines, but I don't think I am the only one that doesn't. I just get a massive headache that goes away a bit after my bp goes back down.

Other than that, I thought it was really good. Anyway, first come, first get, just let me know....morgan

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meg -

i'm happy to send you a copy if you don't grab morgan's extra first. i'm usually pretty good at figuring out technology/ electronics but just got this new one a few days ago and haven't bothered with the recording at all yet. so no hint yet as to whether it will be a 5 minute or 5 month process to get it going :unsure: . if you do want the copy from me just PM or email me your address.

morgan et al -

i do agree about the focus on migraines as it was presented in a way that made it seem integral to dysautonomia/ OI issues. i do get occassional migraines but for me it's pretty much last on my list of issues (which you know very well isn't a short list!). i've been known to say that if migraines were my only issue i'd be in grand shape. NOT b/c can't be terrible but just b/c for me i get them only very rarely. when i do they're bad & i can't do a thing but they're rare enough for me that even though i'm down for the count when they happen they wouldn't limit my ability to hold down most jobs (as i'd only need to use a few sick days a year for them). and i had a dysautonomia diagnosis years before i had ever had a migraine or headache of any sort. but anyway....

all in all i felt the show was pretty well done considering it's trying to summarize a LOT in about 20 minutes (30 minutes minus commercials) and is put together by people who don't know a thing about dysautonomia beyond what they've researched for the show. i'm glad it wasn't "just" about POTS b/c it made me feel like, while the details may differ & while a lot of my issues systemic issues weren't included, that i felt included rather than excluded from the illness being portrayed. i do know that OI is used interchangably with POTS, OI can also be used more broadly for anyone with any type of gravitational issues...which is most everyone with any type of dysautonomia. i know there are some exceptions and/or those for whom orthostatic issues aren't the more predominant, but in general it's the most universal component among the various dysautonomias. obviously things vary in regard to what happens physiologically, but bottom line is that gravity is a problem :P .

so in the end i was satisfied with the program in that i feel like i can show it to people rather than having to hide it. i suppose my expectations were set pretty low but i was hoping for something that wasn't entirely misinformation/ mispresentation. obviously linda's details aren't my own, but i feel the show was done in a way that i can say to family/ friends "that's not me exactly, but it's the club i'm a part of". aside from the million & one things i'm sure we could all suggest for the editing room, the one realistic edit i would have had would have been one general statement that would have at least hinted at the vast array of things that can be affected as well as mentioning the vast spectrum of effect dysautonomia/ OI can have on someone's life (ranging from a minor annoyance to life threatening, with most people falling somewhere in between). but guess no one asked me, eh? maybe next time...

;) melissa

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Melissa, You need to be on the next Mystery Diagnosis, and you can tell them how it is! :P

I thought the show was pretty good. There are things I would change if it were up to me (like stating that the OI range of symptoms and severity of symptoms varies from patient to patient, and not zooming in on one eye!). But all in all, they did a good job and I'm glad to have word getting out about dysautonomia.

I think the show has helped some of my friends and relatives understand just a tiny bit more about what I have. Many of them still don't get it, but they're getting there.

Rachel

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I liked the show and I'm really glad they did a story on dysautonomia. I think maybe they tried to make it more "entertaining" by focusing on the ordeal of getting a diagosis and on things like fainting with a butcher knife and the near head on collision...which they kept showing as a teaser. I wish they'd have instead focused on symptoms and how POTS actually affects her life (and patients' lives) pre and post diagnosis. Even a couple more minutes on this would've helped to better clarify things for friends/family and also to those out there who are undiagnosed.

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It is pretty sad on how the focus can be on dramatic events, and not the day to day struggles, or the crippling and disabling effects of dysautonomia over an extended period of time-----or even a life time. This kind of drama is not going to explain some of the real DANGERS of an ignorant medical society who could kill a patient, just as passing out with a butcher knife in their hand could. It still shows how primitive society can be, and how shallow some people think----especially in the media, and entertainment industry.

Dr. Nazli McDonnell was interviewed over a period of days from " ABCs Primetime" about EDS. Do you know what the focus was? Mostly about the guy in the UK that could pull the skin from his chest over his face. This is rare.....EDS folks having skin THAT stretchy. Yes the skin can stretch some, but usually not like that in most cases. 20 minutes of the show focused on how he turns his EDS into a circus show, and 5 minutes were spent with Dr. McDonnell on the real disabling and life threatning aspects of EDS, and about a minute was spent on a young man in Detroit who was wheel chair bound from his EDS.

I think Discovery health did a better job on the show about OI, but you can definately see that there was a lot missing on the devestating and disabling effects on a persons life this disorder/disease can have.

I think a lot was edited out. Dr. Robertson did give a great summary on ANS dysfunction in the brief amount of time he was given.

When the show started discussing migraines first----I thought the people that I knew who were watching this to find out all about dysautonomia might be mislead. There is a group of folks with dysautonomia who suffer from migraines, but there is a lot more to a dysfunctioning ANS then what the show focused on. Really, a lot more time is needed to show the full monty on this one................ :P:unsure: However, I'm very happy to see SOMETHING out there, and applaud the effort to educate the viewers. In the end, the editing room has the last say.........

Maxine :0)

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