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My story is a bit different from most of the articles I have read in these newsletters. Like all Cushing's patients I suffered a great deal but I did not suffer for very long because I was very lucky to have been diagnosed early on.
I had not been feeling quite myself for the past year. I was tired all the time, I was anemic, I suffered from heartburn for weeks on end, I had skin problems, tons of facial hair, menstrual irregularities and I had muscle injuries that would not heal. In August 2004, I came back from a hiking trip in British Columbia with my family and I was very tired; my cheeks were suddenly very bloated and I had put on a lot of weight. I knew I had eaten a lot of BC fruit but this was ridiculous. My wonderful family kept saying that I looked just fine. I was very disappointed in myself; it felt like I was getting old too quickly which was hard to accept because I was only 42. In September, I started back at school (I am a grade one teacher) and my condition deteriorated quickly; I could barely make it up the steps to my classroom and I was exhausted. I went to see my family practitioner, Judy Chow, whom I have known for 17 years and she immediately suspected a hormonal imbalance problem. She sent me off for the necessary tests and on October 5, 2004 she diagnosed me with Cushing's disease. Three days before that I had started suffering from a non-Cushing's symptom; I was feeling a sensation of electric shocks in my hands, arms and legs. By the end of the week I had to leave my job and say goodbye to my students because I started suffering from anxiety attacks and I was becoming very overwhelmed by this shock sensation.
The following week, I met with an endocrinologist who said that I didn't have Cushing's because I wasn't sick enough nor fat enough. Further tests proved her wrong. By the time I had my surgery I was suffering from all the Cushing's symptoms I had had printed off from the CRSF site. Besides those already mentioned I began losing my hair, my eyes were burning all the time, my muscles were extremely weak despite lots of walking; I suffered from insomnia, I had concentration problems, my stomach was extremely bloated causing constant abdominal pain, and my sacro-illiac joint which I had injured 6 months earlier caused constant excruciating pain even after months of physiotherapy. Furthermore I seemed to have fractured a small bone in my hand and I was suffering from anxiety. This was especially difficult because I am usually a very confidant person. In November I was actually scheduled for a hysteroscopy to remove fibroids in my uterus which were causing serious menstrual complications. My endocrinologist and gynecologist didn't think that the Cushing's was a problem and that I should go ahead with the surgery. However, my family doctor and sister-in-law who is a doctor herself discouraged me from going ahead with the operation. Anyways, my period completely stopped after that for several months.
By December my electric shock syndrome had spread to my entire body; my face, my lips, my tongue. In my stomach the feeling became a motor-like motion. My entire body was affected by this syndrome and it was intensified with noise, light and any little stress. A simple conversation on the phone with a close friend would cause more pain. It gradually increased over the months and became worse as the day unfolded. My poor husband and children were living in a tomb-like house trying to be as quiet and tranquil as possible.
While waiting to get an MRI, I was referred to Dr. Gerard Mohr a very good neurosurgeon in Montreal. I live in Ottawa, which is two hours away. Throughout my illness I tried to be proactive in getting the necessary care; I decided to email this doctor to tell him about my peculiar symptom. To my surprise, he emailed back saying that he would see me before Christmas and to let him know as soon as I got the results of my MRI. Ultimately it would show that there was a microadenoma in the pituitary gland. However the surgeon would not operate until I saw a neurologist because he could not explain my electric shock symptom. He promptly arranged for an appointment with this new specialist on January 6 and he said that I would have my surgery on January 10th if everything seemed all right. On January 6th my husband and I drove to Montreal in a raging snowstorm both of us completely overwhelmed because that morning my dad-in-law had passed away.
The surgery was very successful; I remember the endocrinologist saying "There is potentially good news" because my cortisol was almost undetectable the day after the surgery which could mean that Dr. Mohr had completely removed the tumor. The five weeks following the surgery were extremely difficult because I felt worse than before the operation; all the Cushing's symptoms were worse, the withdrawal was awful, I had an infection in my sinus cavities because of the transsphenoidal surgery, I had a bad reaction to the antibiotics, my period was back and causing lots of stomach cramps, I had really bad headaches and my electric shock symptoms had become even more intense. My husband and I started to face the reality that perhaps this was not at all part of the Cushing's and that I was suffering from another illness all together. Only then did my endocrinologist in Ottawa decide to finally investigate and she sent me off to a neurologist who did a new battery of tests.
By this time I had lost so much muscle tome that it hurt to sit. I spent as much time walking as possible because it's the only thing that helped me handle the withdrawal. I went out everyday in our Canadian winter getting through the wind and snow determined to get better. I would go out to the shopping mall along with the seniors when the ice made it too dangerous to walk outside. I was feeling really rotten and kept repeating that the CSRF people had said to be patient and that I would eventually get better. Well, they were right. One morning I was walking and suddenly I realized that my eyes burned a little less, my heartburn wasn't as sharp, my shocks were a little number and my head wasn't as heavy. I remember feeling such a sense of elation that I took out my cell phone and called my husband at work and my brother in Montreal.
I decided to change endocrinologists because I remember the CSRF information about the importance of working with a good doctor after the surgery. He slowly took me off the hydrocortisone and I have been hormonal therapy free since June 11th! In the Spring I went to Aquafitness, seniors aerobics and 50yr plus Tai chi to try and get back into shape. It turned out that the electric shocks eventually went away very slowly as they had come. It was actually June before they had completely gone away, nine months after they had started. In September I went back to teaching and I am feeling great. I have to go to physiotherapy because my muscles and my tendons seemed to have been damaged by the high levels of cortisol and I have developed osteoporosis but I consider those minor problems compared to what I have endured. I was able to get through my illness because of three factors: I had an excellent family doctor who knows me well, I was able to obtain invaluable facts through this foundation which enabled me to soundly process the information I would receive from the doctors that cared for me and most of all I was able to stay strong because of my wonderful supportive family and friends who went to such great lengths to take care of me when I was sick.
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