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I was diagnosed with Cushing's Syndrome in Jan 1997, after my family doctor suggested that my uncontrolled high blood pressure could be due to an underlying disease. He had read about Cushing's but had never had a patient with it. I was so lucky that he was so well informed.
He sent me to an endocrinologist who carefully explained the seriousness of the disease, and we discussed the approach he would take to find the tumor causing my symptoms. I really never thought much about being sick, since my symptoms were not very bothersome. I did, in fact, have many---fragile skin, high blood pressure, weight problems, hair loss, a flushed feeling, and muscle weakness in my legs. I assumed that most of those were due to age and my life style. I was a 51 year old x-ray technologist, who did lots of lifting and walking. I was exhausted at the end of a day.
The testing began with a confirmation of the 24-hour urine test. Then I had a CAT scan, which showed a right adrenal tumor. Next, I had an ultrasound that showed gall stones. A CRH stimulation test was done in my doctor's office, but it took weeks to arrange. Next, I met with the surgeon and the date was set, but I needed one more test. It was an iodocholestrerol scan that confirmed my right adrenal was diseased and the other was shut down. Surgery would be May 1, l997. Major abdominal surgery!
During all of this diagnosing time, I had developed severe dizziness, paranoia, blurred vision, panic attacks, a balance problem, confusion, shortness of breath, muscle weakness, and a rapid heart beat---I was a wreck. I stopped driving and had to conserve my energy. I had wonderful support from my husband, family and friends, but I did feel dreadful.
My surgery was preformed 4 months after the first lab test and I thought I was going to feel great. I came home from the hospital on 120mgs of hydrocortisone feeling like I still had Cushing's. My doctor told me that my symptoms would improve slowly. I tapered my hydrocortisone and saw improvement. I had some joint pain and muscle discomfort, but other things improved. I developed severe itching and nausea, but kept seeing my weight drop, my skin improve, and generally felt less fragile.
The days dragged. I posted a sign on my desk that said treatable and syndrome. I needed to be reminded. My dose went up and down, depending on my tolerance for flu-like symptoms. After about 1 year, I was able to stop taking the hydrocortisone and my glands were functioning slightly. Three months later they were "normal". It was a slow process, but now at 16 months after my surgery, I am "cured".
My struggle was tolerable because I had so many people helping me. Their kind deeds got me through many difficult days. I am very grateful for my recovery and want to help others. Please contact me if you would like to talk. |
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