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missaf

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missaf last won the day on September 26 2010

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About missaf

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    Cushie since birth
  • Birthday April 3

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  1. missaf

    Korlym

    Have you read the info and side effects for Korlym? More than 60% of the women that have taken it end up feeling worse and not better while taking it. Men seem to do better.
  2. I wish there was a more candid discussion about this. Far too many women are wondering about the risks of passing Cushing's along in some form to their children. Some have chosen to adopt, others to not have any more children period (because of the fatigue of the disease), and other still choose to pursue live births. I personally can't wait to have my tubes tied and move on without worry. My son is already trending towards symptoms and I wouldn't wish this on my worst enemy, let alone a child...
  3. Seriously?!!! Once every 28 days I could give myself a shot, and put Cushing's in a closet?!!
  4. Glad you found us, but sorry you had to find us! You are right to consider Cushing's. PCOS and Syndrome X mimic many symptoms of Cushing's but just like any syndrome, it's a catch-all phrase and needs to be investigated and ruled out before a final diagnosis is to be done. It sounds like you have an ally with this doctor who saw you in the hall. I would ask him who he would refer you to that would be able to help you. Finding a good endocrinologist willing to diagnose Cushing's or rule it out completely is half the battle.
  5. So saliva is not reliable in your eyes because serum results may or may not be symmetrical to your standards? Well there goes about half the diagnoses on this board then.
  6. If the fact that saliva and serum are sometimes disproportionate in some subjects stops the production of a home saliva test kit, then I would have a problem. Otherwise, incremental improvements in the tools we have until we reach our ultimate goal are better than nothing.
  7. I don't really see that as a problem -- it's better than what we have now -- nothing.
  8. It's SOM230, which Dr. L was involved in the clinical trial. I know Dr. F shied away from it because some of the very side effects is causes will make Cushing's symptoms worse, sometimes permanently.
  9. I talked with my dad's VA doctor today who adamantly looked me in the eye, grabbed my hands and said "You must file a claim. Trust me, I'll be by your side when it comes time." I'm mailing the paper work tomorrow!
  10. Just an update on this thread -- I'm applying for Benefits under the APPLICATION FOR BENEFITS FOR CERTAIN CHILDREN WITH DISABILITIES BORN OF VIETNAM AND CERTAIN KOREA SERVICE VETERANS. I'm willing to fight this long fight to recognize that my birth defects and health relate directly to my dad's AO exposure. I'm also willing to file for my son, who has listed defects from the list! http://www.vba.va.gov/pubs/forms/VBA-21-0304-ARE.pdf
  11. Wow, tempting. Seriously tempting. When I have my annual phone appointment I'll ask him what follow up he would need.
  12. This article doesn't even touch on cortisol binding globulin, it strictly uses the UFC as its base of measurement which is just plain old faulty science.
  13. The only thing I have to add is my dad has been tested for his cortisol levels and lo and behold all the tests have been high. I can't get the VA Endocrinologists to even begin to look at the data, though. They chalk it all up to the stress of being in the hospital.
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