After four very long years I may be near a final answer...Cushing's has been established and I am in the "what's causing it" phase. MRI negative for pituitary adenoma but the ACTH Stim test had a very strong reaction. Numbers went up over 200% in half hour. Doctor says its definately a tumor but where he can't say yet. Meeting with new Endo at beginning of the week. Expecting her to order an IPSS test that the primary says he can't order or he would.
So many body systems have gone "bad" one after the other. This left me thinking it was nervous system related. I'd say that Cushing's is pretty related to the nervous system...lol. Lots of misdiagnosis the standard "lose weight / exercise talks" and lots of other disrespectful behaviour on the part of doctors who were supposed to help me. Gained over 98lbs and went from a 2 to a 20 in less than a year. Preganacy at the same time so the pregnancy likely contributed to the misdiagnoses due to expected weight gain.
Primary put me on diet after I proved to him that diet and exercise were already part of my life. That's when he started testing the cortisol levels and well now here I am. My family has been supportive but after four years and many wrong answers they have become "detached" from any diagnosis. Happy to be here and I guess I'm looking for a way to cope through the next phases when no one else really understands what it's like to go through this.