The year was 2007 I was age 16 I woke up like any other day went and played some games with my friends. That night, something happened. It began with a small pain in my side that grew stronger and stronger we went to the hospital thinking it was appendicitis. It wasn't after a few tests and the pain not going away they (doctors) were stumped as to what it was. I stayed in the hospital for about three weeks getting tests done and nothing was found the pain stayed the only thing that was wrong was my level of cortisol was slightly elevated.
A few months went by and many doctor visits later nothing was concluded. Doctors were doing random strange tests and nothing. One doctor wanted to start treating me for Addison’s disease which is the opposite for Cushings but they were on the right tracks. About a year went by and test after test being negative I was diagnosed with Fibromyalgia my body was exhausted and my mind was numb. After a year of testing to be told nothing's wrong really made me sick. But like always, I moved on from it. I rolled with it and I was treated for fibromyalgia with the help of sleep aid and the knowledge of certain things that can trigger intense pain episodes.
Around the year of 2009 my sister was diagnosed with a brain aneurism and had surgery. The doctors who were doing her tests noticed a small link between mine and her results .She recovered from her surgery. And began seeing an endocrinologist after a few months of testing she was diagnosed with Cushings. During this time of her surgery and testings I was trying to finish highschool and start college. The year was now 2011 I was living my life with fybromyalgia but I began getting sick I remember having an adrenaline rush and nearly passing out because of it something wasn't right we were for sure of it. I began seeing my primary doctor letting him know what was happening. I had weight gain, low immune system, blackouts and pain. The doctor’s response was I was depressed. Cool story right.
I sucked it up and dealt with it for another year. My sister was diagnosed with Cushing’s and my parents noticed we had similar symptoms and started and put two and two together. I made an appointment with my sister’s endocrinologist and she noticed right away that something was wrong. For me, I felt joy that someone was going to help. She noticed the straie on my neck and underarms and jotted down my symptoms which included bone pain, muscle weakness, excessive urination, thirst, fatigue, headaches, thin skin, and bruising. I was text book Cushing’s. They immediately started testing me for Cushing’s. My first urine test was the worst they have ever seen. My cortisol was sky high at a level over 70. Other family complications that happened through the year put my treatment on hold. Meanwhile my sister was able to participate in a cushings study with a medication that was new to the market called Signifor, it was a daily injection that had the chances of shrinking and stopping the growth of the tumor. After a year, her results were great; she lost weight and looked healthy. I began going back to the doctor and had more testing. My cortisol was really high around 60s. The levels made my body constantly tired and sent my body into over drive. I did an MRI and Dxa scan. They stuck a tube into my brain to see where the leak on the pituitary is. 3 months later my results came back and the conclusion reached was that I had Cushings Disease. I had multiple tumors but none were visible. That was why my body was shooting out cortisol. My life flashed before my eyes. Years and years of waiting, crying, and testing I finally had my answer. I got into the case study for CD.
I was the only guy in my state to be diagnosed with CD at the age of 22 and my sister 19. We were the talk of the town. Unfortunately testing requirements were very complicated and I decided not to do the study and instead go for the medications. It took a few months to get the medications since they were new and pricey. It was okay to wait since I’ve been waiting for years. After 7 weeks I got my first order of Signifor. I began taking the injections. The first injection made me vomit and I continued to vomit after for two weeks. One morning I woke up smiling, I no longer felt a lot pain in my body and my mind felt clear. I was on the road to recovery. After 2 months of taking the medication I feel great. My mind is right; I still have pain for fibromyalgia. I had my first adrenaline rush and didn’t pass out. My mental status is good I have always stayed positive despite what has happened. I keep my mind away from the depression. Now life is falling into place. The next thing I need to worry about is what to do in life without wondering if tomorrow will be my last day on this earth.