And It's About Time There Was Some Support For Cushing's!
This is the general story of my mother's experience with Cushing's disease, which she self-diagnosed in the 1980s. She had her first surgery in 1987, when they removed a small tumor from her pituitary.
In 1993, her pituitary was irradiated. In 1998, they identified the tumor more precisely and claimed to have removed all of it they could possibly see and get to. By the spring of 2003, she was showing symptoms again.
She is now 78 years old and has been on kenocotizol for about a year. it hasn't been going well. the "symptoms" of the disease have been steadily progressing while dealing with the side effects of the drugs. She has had very reputable doctors and surgeons here in Rochester, NY, who are now essentially stymied, since all of her tests indicate that she is perfectly normal and that the drugs are doing their job adequately. All her tests are good, yet, the disease is wasting her extremities and crisping her skin while increasing her torso and now getting evidence of a buffalo hump and a ring around her neck. One of the main issues is weakness in her legs and the ongoing struggle not to injure her skin in any way.
We really wonder what the answer is to this quandry? So far, the only alternative treatment seriously suggested in the removal of the adrenals. Her doctor is very nervous about how her pituitary will react if that road is taken. Other drugs are a possibility, but with other side effects to deal with that are potentially more severe. She is also starting to become short of breath with small exertions. Until last fall, this was a vigorous woman who could play tennis or go cross country skiing every day.
I wonder who to turn to and if anyone has any suggestions as to what the next step might be. Pituitary surgery or irradiation is no longer an acceptable option. they can't even find the tumor anymore.
any feedback is very welcome.
thank you all,