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Everything posted by justashell

  1. Totally edited my first post. Discovery Health or other network had show about ARchie---a large British baby---who's mother found answers from a doctor in Brazil. Archie was dx'd with MOMO syndrome. And I've found an interesting site that may be helpful to some: http://www.makingcontact.org/index.php?ci=1894
  2. I just saw this on the "crawl" on tv... I remember seeing a story on tv about Sandy---she was an amazing person!
  3. Hey Judy--- They ought to fly you up---and you can tell them about how you figured everything out!!!
  4. Maybe all the beer bellies up there aren't due to the beer---but hydrocortisone? Are you thinking of applying? They have to have a "control group", and then they have to have the "lab rat group"---maybe you could be the "wild card group"??? They could see how you are compared to the others. Or maybe they'll listen to your story and get you into another study?
  5. Hey---I missed the part where you were supposed to question the patient as to why they wanted a disease like Cushings... Maybe I ought to do some more looking...
  6. Your avatar picture----it looks like you're "hatching" or coming out of your chrysalis...your head is hinged---and the new you is coming out?
  7. I imagine that 8T causes brown-outs on the electrical grid when they start it up. I can just imagine them revving it up---and all those hydrogen atoms in your body wondering what the heck is going on. (What the heck just happened Mildred?)
  8. Robin when are you going to "hatch" or "come out of your chrisyalis"??? Ignore me if I'm sticking my nose where it doesn't belong...
  9. the signal-to-noise ratio and spatial resolution of a 3 T system allowed better localization of the small pituitary adenomas that casue Cushing's disease. These results confirm earlier findings [9] of the advantages of a 3 T system in the assessment and identification of pituitary macroadenomas and microadenomas. In a subset of patients in who imaging at 1.5 T did not definitively identify the tumor, preoperative bilateral cavernous sinus sampling (CSS) correctly lateralized 22 of 26 subjects [ I think I can hear Gracie singing the praises of a 3T machine! I can't wait 'til they come up with one that goes to "11"---(Spinal Tap). Thanks for sharing this Robin---I still get looks of "yeah right", when I tell people I am treated by a special doctor in L.A....and his trusty fellow researcher, Z!!! Thank goodness for smart folks who love to understand all this stuff! It's more complicated than the last 40 years of General Hospital!
  10. Just a couple of weeks ago, I found a brochure in the office of my local labcorp about thyroid disease---it was published in 2005----and according to this brochure---my local doctors should have tested me for a "rare pituitary tumor" due to my odd lab levels. I wonder if doctors are misdx'g thyroid disease---and their patients develop diabetes. There are a whole lot of people who have diabetes----and some of them I know look like they have Cushings.
  11. Quote: Finally, although it is technically difficult and the cut-off levels for acceptance of the success are not standardized, the subtype forms should be identified using a selective adrenal venous sampling. Unquote It sounds like they're still figuring this thing out. Good luck Amanda!
  12. www.endotext.org It might be worth contacting one of the doctors listed---you've been through a whole heck of a lot---and it doesn't make sense.
  13. MaryO--- Un-stinking-believable...I wonder if the insurance company would be liable if you suffered from blood clots or stroke due to oral estrogen? There's a revolution in our town---lots of orthopedic doctors are opting out of their contracts with the insurance company. A major employer has chosen an out of state insurance company. I wonder what's next...
  14. I don't like the sound of that last sentence: "Given the high cost of treatment, dynamic testing for growth hormone deficiency should only be performed in patients in whom there is high clinical suspicion, and therapy should be limited to those with biochemically proven growth hormone deficiency." Just saying... OK---I'm saying that people should come before money!!!
  15. Glad they're looking at more than just the fat. Hopefully, the doctors will be more smarter about stuff---for a change.
  16. Great...I like that stuff!!! (fluticasone) Don't know about the other stuff---but I'm going to be watching things like a hawk... Thanks MaryO!
  17. I want the same hormonal challenges that those skinny and beautiful chicks have. How come I got stuck with the nasty hormonal ones? I especially liked the one about out of estrogen---I have a gun. Would love to send it to my ex-pcp who took me off estrogen after Time magazine came out saying that HRT is "bad" for you. Ugh!!!
  18. Just as I expected: We're all DOOMED!!! Seriously---there are some major problems with a system if your error, efficiency, ratings are this low---- and the mistakes, oversights, etc., are this high. MaryO---I think you have done something incredible---created a patient advocacy/learning "center". You've done so much to empower folks who have been told false and misleading information regarding their health. I'm sure some doctors don't like to be "told" stuff---but that's their problem. Our job is to not be pushed around. I think the system needs a major overhaul---you've done your part---now it's up to the medical profession to recognize where they're falling down on the job.
  19. You have the patience of Job!!! I couldn't manage to work with these poor kids---and I know it's not their fault! It's an incredible challenge for all of those who are involved---you are an amazing person!
  20. Prader-Willi Syndrome was featured on one of the cable health channels a couple of years ago. There is a special "institution in Pennsylvania where doctors and staff try and help the kids who suffer from P-W, to learn to coping skills so they can better deal with life. It's sad---these kids look like "fat" kids---and they act like "brats". As hard as it would be to have to take your child to a place like this---it is probably better than having to deal with a lot of misunderstanding at home. I take GH---and it says that it should not be given to folks with P-W---not quite sure why. It's a devastating thing to deal with---I know parents have had to literally put locks on their kitchen cabinets and the fridge and freezer---but some kids have taken a screwdriver to the hinges or just ripped the cabinets apart to get to food.
  21. Doctors ought to realize by now that "lecturing, shaming or humiliating" their patients about obesity, shows how ignorant the doctors are about the "healing arts". I think this is the ultimate betrayal---by professionals who are supposedly well-trained and definitely well-paid. How many times have we been told that we can't "change" anybody? Maybe the doctors ought to get off their crumbling podiums and quit judging us. For me---it's the "judging" that drives me crazy. I still look to my doctors for support---but sometimes I get lectures.
  22. I was on phen-fen too. I did lose a bit of weight---but I remember hearing about potential problems---so I stopped taking it. Thankfully, I do not have any heart valve damage. I remember a friend of mine who had taken it around the same time was absolutely freaked out about heart damage---and contacted lawyers in case she did end up having some sort of problems. She eventually had gastric bypass---right around the time I blew up like a blimp. Relationship dynamics changed right around that time. It's crazy how much your self image and esteem is tied up in your weight and appearance. An acquaintance became seriously suicidal after taking cholesterol lowering drugs (I can't remember which one). The depression came out of nowhere---she'd never had problems before---and after she found out what the cause was---she found out that close relatives had the same experiences with the overwhelming depression. She quit the cholesterol lowering drug and decided that if she's going to die, she'd rather be happy and die of too much cholesterol---than be depressed and have lower cholesterol readings.
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