And It's About Time There Was Some Support For Cushing's!
I had felt bad for a long time when my muscle pain and weakness started. I can not tell you how many times I went to the ER with horrible chest pain. I was diagnosed with either Costochondritis or anxiety every time. I knew that was not it. Along with the chest pain I had many stomach problems. Dr.s ordered an abdominal CT but I knew it was a waste of time and money because I had just had one a couple of years before that showed nothing. Low and behold, the new CT showed an adenoma on the right adrenal. My new doctor looked at a copy of the previous CT and the adenoma was there years before but went unreported. My cortisone was checked, it was high and my ACTH was low. 6 months later my surgery was performed and I thought I would be well on the road to recovery. WRONG. I did not loose a pound and I felt no different.
Now....Two years later my ACTH is more than double the high normal and I am very worried. When the doctor told me the results, I stood up and said NO! What else can it be besides a pit tumor. He said "Lung Cancer". So...... I am back to square one and really don't know what to do. I am more scared this time than last. I want to take an aggressive approach to my medical care. I had seen so many different doctors that were such jerks. After my surgery I found Dr. Blevins in Nashville to do my follow ups, but he has since moved. I have to start all over with a new doctor. It is a 6 hour drive for me to go to Nashville, I wonder if there is another doctor closer to me that would be just as good? I have such mental confusion this time that I can hardly function. My kids think it is funny that I say funny things that make no sense.
I forgot to mention that I had breast bleeding about 9 years ago so instead of finding out why, they just took the milk ducts out where they could not bleed any more. I bet you I had something pit going on then.
I am very scared this time and would love some advice from the experts (my friends on Cushings-Help).
Unfortunatly my husband has a job that has transfered us a lot in the past 5 years. I would love to find a doctor closer to me that has a good knowlege of Cushings. I live near Kentucky and Ohio.