Cushings disease diagnosis after 30+ doctors and 7 years
For years I had felt like I had the flu every day. It didn’t last long, just a few hours each evening. It started to get worse and I started to look for an answer. I also started gaining weight, even when controlling diet and exercise. The doctors did a few tests and found a tumor on my adrenal gland. They treated me for stress. I got worse on their treatment. When I started getting worse, it seemed like they just started using different medication and diagnosing me with various names. In truth, they weren’t looking past the weight gain or the fictitious stress they believed I had. They all had it in their mind what it was and would not listen.
After a new MRI of my adrenal glands, they decided to take the tumor out of my adrenal gland. It had grown a bit larger. That was a sign that it was probably cancer, or so we were told. The first surgeon told us he wouldn’t take it out and wanted me to be re-diagnosed. He wasn’t comfortable with the situation. By this time, I was getting frustrated with doctors. I self referred myself to a Cleveland hospital. During my appointment with the surgeon, they said it most certainly needed removed. It appeared to be bigger to them than what the MRI was showing. They did some urine testing that showed positive for Cushing’s disease. They canceled my surgery and did another test, once again showing positive for Cushing’s. The doctors told me I couldn’t have Cushing’s, it was too rare. I got a second opinion and that doctor laughed at me. I got a third opinion over the phone with a doctor on the west coast. He told us I needed to be on a plane that week to get to him. We left the kids with relatives and flew out to the west coast (I live in Ohio). I tested positive for Cushing’s many times that week, but still no help. It would take another 18 months of testing and 10+ doctors to get a diagnosis.
We would eventually fly back to the west coast to the same doctor again. Once again I tested positive, but no official diagnosis was coming. We tried every doctor in Ohio we could find that knew something about Cushing’s. What we found was a lot of doctors who would not accept my 5 inch file of lab results, doctor notes, and imaging. Most of the time, we were told Cushing’s was too rare and laughed at by the medical staff, after proper payment. Finally we traveled to LA and saw the top doctor in the Cushing’s field. Within a few months, I was diagnosed and on the way to brain surgery. To get that diagnosis would take two surgical tests performed at university hospitals in two states.
I traveled to a cancer treatment hospital to have a brain tumor removed from my pituitary. I was in remission a few months and ended up having both adrenal glands removed over a year later. The brain tumor could not be completely removed. The loss of the adrenal glands was an extreme way to cure me from Cushing’s disease. It would take over 7 years and 30+ doctors to get cured. My body is damaged along with parts of the brain. I lost bone and muscle mass. I can’t walk well. I get infections because of no immune system. Some, or most of all that, will heal. I will not however be 100% of what I was. I will never regain those seven years of lost time and wages.