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My story starts the same as most of the rest: weight gain, memory and concentration loss, bruising, buffalo hump (how did they miss that??) and lots of non-productive doctor/chiropractor/massage therapist/accupuncturist visits. Finally, I self-diagnosed myself (by chance with a magazine article and then research at the library). I changed from one endocrinologist and her neurosurgeon to others because of comments like: "don't talk about operation death rate, it makes me superstitious", and "my other patient complains so much about my delaying her operation. She's been sick for so long, what's a few weeks more?" My second-opinion doctor said "I used to use that neurosurgeon, but not anymore". I found a great endocrinologist and neurosurgeon and had 5/8 of my pituitary removed (successfully) at UCSF.
Recovery has been very difficult. In addition to the challenge and pain of Cushing's recovery and the subsequent hypothyroidism, I was diagnosed with a secondary condition of fibromyalgia (ow!) and had to contend with all if its symptoms (overall body ache and pain, irritable bowel syndrome, fatigue, sleep disturbances, etc.) So, watch it, folks! Don't get so caught up in thinking all of your pain is due to Cushing's that you overlook the possibility of another cause. I still do not have a recovered pituitary (it's been 4+ years since my operation), however, I limit my hydrocortisone to 15 mg. a day. This limitation and my recovery is going well because, through investigation on my own again, I am using vitamin therapy (magnesium, malic acid, B-complex, C, E, and Calcium/D) and challenging exercise to make myself as well as possible. I'm about 85% physical and 100+% mental back to normal. My life is a gift from God and I intend to make the best of what I have been given! |
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