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Pam's Story...

I was first diagnosis with Cushing's Disease in December of 1994. I had been very ill for years with some very strange symptoms. All the doctors that I went to made me feel like I was a hypochondriac, this went on for years. Finally I went to a Doctor in internal medicine at the Cleveland Clinic. She started running all kinds of tests on me and diagnosed me with Cushing's Disease. I went home that night and pulled out a medical book to read more about the disease and to my surprise, I had almost every symptom that has ever be known of Cushing's.

I was advised that I needed surgery to have the tumor removed and was told that I only had a 15% chance that the tumor could return. When I asked the doctors how I had got this disease they couldn't tell me. They said that the only way they knew was if a person had been treated for another medical condition with steroids for prolong periods of time. I had never taken steroids in my life for anything. I had surgery in Jan. of 1995 and was very ill for almost 2 years after the surgery. My doctor told me that it was because by the time I was diagnosed, my steroid levels were so high that my body was going through extreme withdrawal. Finally after about 2 years I started feeling better and they were able to start taking my off the steroid therapy in hopes that my pituitary gland would start functioning again. In March of 1998 I was completely taken off the steroids and told that I was fine.

Within a year I started feeling some of the symptoms returning and sure enough the I was having reoccurring Cushing's. When I went to my surgeon, I asked him if I had the surgery again to remove this tumor what were my chances of it coming back again. He told me that I had a 85% chance this time of it returning. I asked him at that time to remove the entire pituitary gland rather than just the tumor again. He refused, he stated that in good faith if he felt that he could remove the entire tumor, that he was not comfortable with removing the pituitary gland even though I had a 85% chance of it returning again. Needless to say I was very upset and scared.

In March of 1999 I underwent surgery again and am currently still taking steroids along with other medications. I have been told that they do not feel that my pituitary will ever function again so I will need to be on steroid therapy for the rest of my life.

With everything I have been through, I am still very much in the dark about this disease. If anyone out there reads this and can enlighten me I would appreciate it very much.

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