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Everything posted by gumdrop

  1. I'm so glad your family and you advocated for yourself. Can you pm where you went in NJ for your scan? I know some people who had it done incorrectly here and I know they use different injections. Curious where you went. I'm post bla and still making cortisol on my own and I'd like to find my source.
  2. Thank you for doing this chat. I could tell by the area code of one callers that there is yet another Cushie in my area. So sad.
  3. Taking a dopamine agonist doesn't cure Cushings but it may help to some degree for some people. Doctors don't know what causes the low dopamine in the first place in Cushings the same way they don't know why in Parkinson's. Cabergoline has been shown to cause tumor growth (other kinds of tumors outside of the pituitary kind) and eventually uses up your dopamine reserve. I wish there was more research money for this disease.
  4. I didn't see Dr. Fahey. I see Dr F in Los Angeles.

  5. I've heard the replacement levels of dopamine agonists is low enough that it doesn't mess with the heart. I wonder if that is true. Either way, there is no way to win with this disease.
  6. If a person is cured/has a remission from Cushings and ALL hormones are balanced, then why don't many people see a return of their libido? Could it possibly be a neurotransmitter deficiency?
  7. I'd like to hear more about rest tissue and NP59. Is rest tissue in the adrenal bed typically cause by the surgeon not removing all of the gland or does it grow back? Anything about cortisol pumps?
  8. My doctor told me Mifepristone was unsafe because eventually it blocks you from receiving cortisol when you really need it (e.g. you are in a car wreck). He said that even when people were given cortisol replacements, that the body was not able to receive it which could kill you.
  9. What a tragedy!! I thought socialized medicine in England paid for everything.
  10. http://cushings.invisionzone.com/index.php...91&hl=henry The jousting accident that turned Henry VIII into a tyrant http://www.independent.co.uk/news/uk/this-...nt-1670421.html Two serious head injuries in his life. Its the perfect recipe for Cushings.
  11. If you want something done right, you have to take care of it yourself.
  12. I'm Henry the VIII I am, I am I had 7 other tumors before........ I'm Henry the VIII I am, I am I had 7 other endos before......... I'm Henry the VIII I am, I am I had 7 other diagnoses before.....
  13. Do you treat patients with pineal gland tumors?
  14. What are the odds of dying during pituitary surgery?
  15. 1. What feeds pituitary tumors? 2. Do you think Cell Therapy (the transplantation of human or animal cells to replace or repair damaged tissue and/or cells) should be or will be used for Cushings treatment? 3. Do you think alternative treatments like heavy doses of shark cartilage will get rid of a pituitary tumor?
  16. I don't have a confirmed family connection to trace my Cushings back to (although I think I know which side it came from), and the part that I think has been carrying it, my aunt has Alzhimers. I remember she used to say all of the time "I don't know what it is, but we've all got it!". I hope the medical community takes the findings seriously from this study. Wasn't there another article on the boards about a Parkinson's, Cushings connection? I guess all brain related diseases go back to the HPA axis being thrown off.
  17. Thanks for sharing this. I can't wait to hear what Dr F has to say about it.
  18. I saw the Discovery show about her two Sundays ago also and wondered how she was doing. She always seemed to have such a positive spirit and sense of humor about her. I'm sorry that she couldn't get help sooner.
  19. I know a family that has a kid with this disease. He was so weak and floppy as a baby, and now he's huge and hungry. It's heartbreaking to see.
  20. I've had it with insurance and employers. Everyday I get upset when I go to check my mail. I've never heard a peep from my life insurance company until recently and also got a letter and a couple of phone calls from a nurse at my health insurance company who wants to help manage my case. (Maybe the 20 pees tests I did this last month or so raised a red flag.) I keep thinking if I ever leave my job that I won't get coverage at a new job because of a pre-existing condition. It's all too much.
  21. It sounds like a great program. The only problem is that so many, including a few on the boards have been told by NIH that they didn't have Cushings when clearly they did, pathology and all.
  22. Mary, I'm so glad you posted this. I had a brain injury which caused my body to almost completely stop making growth hormone, and hitting my head made my Cushings symptoms go into high gear. I posted about my VO2 levels from my exercise test a few months ago, but no one was able to shed any light on it. Now I have some more because of you. http://cushings.invisionzone.com/index.php...c=26974&hl=
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