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I am a 51 year old mother of five who had always been actively involved with my children and community. Eight years ago I started getting bruises the size of softballs on my legs. Tests showed nothing. My blood pressure started to rise and my eyes were giving me trouble. After visits to specialists, my diagnosis was chorioretinal folds in both eyes (folds that make things wavy and distorted looking). It was unexplainable and I was told I had to live with it.
The bruising became more frequent along with weight gain, moon face, red and flushed look, bulging eyes, thin skin, loss of sleep, excess energy, off balance, depression, and a beautiful copper tan. My doctors told me I was going through the change. I thought I was losing my mind and my children were ready to commit me.
In June of 1999, after years of doctor visits, it was discovered I had Cushing's. An MRI of my pituitary showed nothing but the venus sampling was positive. In October 1998, the right side of my pituitary was removed. However, no tumor was found. Two months later the left side of my pituitary was removed. Still no tumor found. In March 1999, another MRI showed a tiny piece of tumor on the left side. I agreed to another surgery. Again, no tumor was found. Within two weeks though, I lost 20#, the redness was gone from my face, no bruising and my ACTH levels were normal. Overall, I was feeling better. The surgeon was not convinced because no tumor was ever found. It has been nine months and I feel pretty good. It is my eyes that bother me the most. They are getting worse.
I would like to hear from anyone with choriorentinal folds. I live in Cincinnati and would like to know if anyone in this area has started a support group for Cushing's. I am interested in talking to others to compare our life styles to see if there are similarities that might give us some answers to this disease. |
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