Friday, May 22, 2009

Cindy, pituitary bio

I was first diagnosed with Cushing's disease in January 2002. I suffered from this disease for approximately 4 years, all the while seeing doctors who had no idea what was wrong with me.

I finally connected with a wonderful doctor in January 2002 and he took one look at me and knew what was wrong he had me do a battery of tests and found that I was in the last stages of Cushing's and in fact he could not believe I was still alive with the acth and cotisol levels in my body. I was so severe that it damaged my heart and I have an implanted defibulator.

I underwent the transphanodial procedure in May of 2002 and could not believe the difference in my quality of life. Unfortunately I came out of remmission in the end of 2005 and underwent the same procedure again in February 2006. It took 1 & 1/2 years for anything to show up in my labwork due to it being cylical.

I am now again struck down with this disease. I am constantly feeling bad and again playing the waiting game for my labs to show proof. My family feels helpless due to the fact nothing can be done at this point and I know that I will only go downhill further before anything shows up.

The doctors talk about the next step is to remove my adrenal glands. This is also scary however I am to the point that I am really ready to do this if it means my quality of life will improve.

I would really love to talk to people who have been in my situation and maybe who have undergone adrenal surgery.

Email Cindy

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