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Mystery Diagnosis


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Hi everyone,

Per my sister, Mystery Diagnosis will be airing a story on Feb. 19 at 6pm about a girl who has POTS, EDS and chiari malformation. Mystery Diagnosis is on the Discovery Health channel. Hope you guys can catch it!

Michelle

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Poohbear, my sis said the first story is about a firefighter who gets AIDS. The second is about the girl with POTS. I think it must be the "Blood and Fire" one. It is on at 6pm. If you go to the Discovery Health Channel website, http://health.discovery.com/, you can find it by clicking on the "What's on this week" link to the left. You have to change the time to 6pm-9pm anad the channel to Discovery Health and then click go to see it.

Michelle

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a few of us saw the show when it aired in november. here's the link to the bit of discussion there was about it then:

http://dinet.ipbhost.com/index.php?showtop...iscovery+health

:huh: melissa

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I just tried to set my TiVo, and it shows Extreme Engineering at 6 pm on Sunday. If any of you figure out what time it's on, please let me know.

On a positive note, it seems they have at least touched upon autonomic issues a couple of times in the past few months. Now to get them to actually do a full story on one of us! :huh:

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It was on again today--sorry, didn't tape it. Basically the girl, Marissa, was suspected of having POTS, but actually had EDS with chiari I and a retroflex odontid. The NY folks (Mihlorat & Bolegnese) fused here top 3 vertebrea and skull to stabilize the upper spine--and most of her symptoms disappeared. She is now a professional model.

they only mentioned POTS briefly and tried to treat it with high doses of Prednisone and high salt diet. No mention of TTT, florinef or midodrine.

Nina

oh, and it is called "blood and fire".

here's the link to discovery health's viewing schedule, including "mystery diagnosis", which was rerun 4 or 5 times just today.

Nina

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Sorry Julie, I watched it but did not tape it. I had a bit of a different take on it than Nina. I thought the girl did have POTS/EDS, but then her POTS symptoms went away after surgery for Chiari and Retroflex Odontoid...but now that I think about it, they never really did explain that.

They did not explain POTS thoroughly either, but they did say the girl had pooling blood in her legs that was causing her blood pressure to drop and her heart rate to soar, so that was something. The treatments they gave her for POTS were not conventional, but I was still thrilled to see POTS mentioned. The main focus of the show was Chiari though, so if you are expecting a show on POTS alone you will be disappointed with this one.

Michelle

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Guest Julia59

Actually---I am interested in all 3---chiari, pots, EDS---since I am diagnosed with all three.

Only recently I have noticed blood pooling in my legs---I never believed I had that---and never looked all throughout 5 years with this. One day I looked at my legs in the shower and they were purple. Maybe I better think of the stockings----uggg----all I can think about is the pain in my neck and upper back and arms while trying to pull those suckers on. But it may enable me to walk to the other end of the grocery store when I go in for two items---bread which is on one end---and orange juice which is on the other.

I know I am diagnosed with POTS, but since I passed the tilt table, I never thought it to be convential POTS--

-but then again I was on meds---and refused the Isuprel--(spelling?). Everyday for the last three weeks my BP has been an average of 70/50 standing---but seems to get higher towards evening---that is when I seem to be more hyperadrengic. I am also diagnosed with retroflex odontoid---( I usually list it as cranial/cervical instability, but it's really more then that) by Dr. Bolognese with pannus growth formation on the odontoid bone. Dr. Heffez saw the pannus growth---but did not really agree with the RO. The Doc in The University of Mi. saw the pannus growth, but said I did not have significant RO----I never even brought it up to The NSG at the Cleveland Clinic.

Anyway---there would be NO pannus growth if there wasn't friction---and that would be caused by nothing else other then the RO. I wished I would have seen the show as I am a complete mess from c3 and up----not to mention C3 and down----which leads me to wonder, which surgery to I have----(the laminectomy/fusion for the congenital cervical spine stenosis/or a decompression/cervical/cranial fusion?). Never mind the mess that is manifesting in my lower back and hips. I'm so wobbly---it scares me. Sorry about the drama---but unfortunately it's based on a true story---LOL--- :)B)

I'll check out the web site Nina---thanks for the information. I had it on tha calendar---but for 8:00pm---UGGGGGGGGGGGGG---DARN..............

Obviously they need to focus on POTS primarily ----because they need to focus on possible causes of this illness. Yes it can come secondary to chiari and EDS both----but it seems that those disorders are getting some exposure---finally---but still a lot of ignorance on those as well----i.e.------>The ignorant neurologist I saw at MUO who told me all of this is manifested in my mind---and to go jump on a trampoline. I asked him about a trampoline on purpose---because I rememeber jumping on a mini tramp about 15 years ago---and feeling an electrical shock type feeling in my TONGUE>>>>>>>>>>> :D

I have to do something soon---I don't know how much longer my legs are going to last.

Julie :0)

The WACMA---(world arnold chiari malformation association web site was discussing that.)

I think someone taped it--------

Julie :0)

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Michelle, my take on it was that she did have EDS and that combined with the retroflex otontid and chiari caused her POTS symptoms. They fused a good portion of her spine, and it kind of makes sense that the stuff that came on suddenly in her later teens (passing out, dizziness, headaches) were probably chiari related and resolved. However, they didn't do that good a job of saying whether or not she still has any EDS problems.

Nina

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