Day 10 of the Cushing's Awareness Challenge: What I Have Learned the Hard Way

When I first realized I might have Cushing's Disease, I thought it would be easy to get help.  After umpteen dozen doctors, endocrinologists, bariatric surgeons, and neurosurgeons, I found out otherwise.  While many things are diagnosed fairly quickly, it took years to be diagnosed even with conclusive tests to prove I had Cushing's.  

I learned the hard way that I had to be my own advocate. I started researching in reputable places such as medical journals all I could learn about Cushing's Disease/Syndrome.  I found knowledgeable doctors/endocrinologists/neurosurgeons to test, look at tests already done, and read MRI's.  Only have I expended that effort by traveling all over the country was I diagnosed for the first time preceding surgery to remove my pituitary tumor.

Even after that, when I had a recurrence, I had to choose to travel to a renowned endocrinologist again.  There aren't many out there who really understand the disease.  Those who research and study it are more prone to understand it.  Now, I know that with any disease, finding the doctors who are most knowledgeable can save my life.  I went through almost 30 years of Cushing's before my remission due to a bilateral adrenalectomy. I wish I'd know at the beginning what I know now.