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Everything posted by SusanM

  1. Sounds like work! On the other hand, it sounds like it will be very helpful to some. Just curiosity...what was this stopped before? Was there a problem?
  2. Thanks, MaryO. My apologies, I didn't go back to the original but read just what was in this thread.
  3. Melissa of TX, thanks for doing this work and pulling this list together. As I read through it, the list has a powerful impact to the reader. Having to have a list like this makes me sad (that any of us are sick), but doing so helps the world understand more about who we are. I elected not to participate for personal reasons, but encourage others to do so. One minor thought....pituitary adenomas are not the only thing that causes Cushings. Pituitary Hyperplasia is the rare form of this disease and thought you may want to update the definitions portion to include pituitary hyperplasia along with pituitary adenomas.
  4. There's a fine example of patient advocacy. Thanks to the help of your sisters, you found the answer. That's amazing!
  5. Best wishes that this is processed quickly and approved for you.
  6. Love the new boards! Love the look and feel of the new boards. It's easier to reply with the reply box at the bottom of the messages. Also wanted to add that I am flying through the messages. It is very quick! That's a bonus!
  7. No, hyperplasia is not a precursor to tumor formation. It is different at the cellular level.
  8. I wonder if this is also true for hyperplasia as well; the article doesn't say. Hyperplasia is a bit different than an adenoma but still causes Cushings.
  9. Good idea for you to be interviewed. Look forward to listening.
  10. I worked for CIGNA for nearly 30 years prior to retiring. Their Phoenix set up has been in existence for more than a decade (probably 2 decades) and is not a new situation. It appears to have worked well for those in Phoenix. As for the United, it's interesting what they are doing. As with most things in life, there will be positives and negatives. The insurance industry is heavily regulated by each state and they will not be able to operate outside of those regulations. If there are problems reported in the 'quality' of care, the legal system can be invoked to take care of them. I wrote in another post the other day that if I had been in an HMO, I would not have been diagnosed. That is my greatest concern when I see items such as this. To me, this is going to be a watch and wait situation --- it will get large media attention if there are problems.
  11. http://www.healthgrades.com/directory_search/physician/profiles/dr-md-reports/dr-daniel-kelly-md-0433d821

    Here's the information for Dr. Daniel Kelly who is a neurosurgeon out of Santa Monica. he is well known and respected.

    Good luck!

  12. Found this article today on Dr. F's website and think it is very helpful. It has quite a bit of research data which is interesting and many of us have contributed to that data! Enjoy. http://www.goodhormo...ushings-hmr.pdf Title: High Prevalence of Normal Tests Assessing Hypercortisolism in Subjects with Mild and Episodic Cushing ’ s Syndrome Suggests that the Paradigm for Diagnosis and Exclusion of Cushing ’ s Syndrome Requires Multiple Testing
  13. Hi, MaryO! I am a bit out of touch with the FAQ being created, but saw the definition for Cushings Disease. It is not only a tumor that causes Cushings Disease---many of us have the rarer form of this rare disease which is Pituitary Hyperplasia. It also causes CD and may be nodular (shown on MRI s a tumor) or dispersed (meaning spread throughout the gland). I wasn't quite sure of how to update this definition. Hope you are doing well and THANKS for your continued efforts on the boards!!!!
  14. Congratulations on your ancestry search and discoveries! Isn't it fun! After watching NBC's Who Do You Think You Are, I went on Ancestry.com and discovered that others had built pieces of my family tree (on one side) and I just had to put them together. It went all the way back to Germany in 1607. Now that you have that informaton about Harvey Cushing, do you feel any better about your BLA?
  15. Thanks MaryO for posting this --- you beat me to it! This topic is so important to every Cushie out there. Thoughts, feelings, and emotions are a big component to this disease and I hope that folks take the opportunity to attend the webinar.
  16. YIPEE! Thanks, Dr. F for coming to be with us again. Question: There appears to be several folks who had BLAs and now testing for a recurrence. How common is this situation? How do you test post BLA? What are the possible causes for high cortisol post BLA?
  17. 60 minutes had an interesting segment last night with a scientist who was involved in the human genome project. He indicated to the moderator that you have to do the research first (self-funded) and then the government money may be available for further research. That pretty much said it all.
  18. good article. I know that if I want to lose weight, I need to eliminate the diet cola. Not sure why it is that way, but suspect that the aspertame has something to do with it.
  19. It appears that their criteria for diagnosis is pretty strict. Wondering how many of us would have been diagnosed using their criteria? The use of CBG testing isn't mentioned in the article. Has anyone gone to Mayo Clinic and gotten diagnosed? What was the protocol that they used?
  20. I had pituitary hyperplasia that caused the Cushings. There is no link between hyperplasia and fibro.
  21. This article is a bit disturbing. There doesn't appear to be much research behind the statements other than some limited surveys. It begins by saying that it has not bee studied, but then goes on to make statements. I have had congestive heart failure and I have had (at times) chronic adrenal insufficiency. There is a difference --- a big difference. The congestive heart failure was much worse than the AI. The AI can be quickly resolved with a medication change and did not have the disability effect of the congestive heart failure. In my opinion, this article does much more harm than good. It leads those with AI to think that it is the same as congestive heart failure and it is not doing them a service. Sorry, Gina, but I believe that this is not based on science, but anedotal evidence.
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