This is taking some twists and turns, but apparently my experiences with the medical profession are common when dealing with this illness. Okay. I do not have heart disease, although I do have arrhythmias. I'm now being tested for a rare illness, called "Cushings Syndrome." Cushings Syndrome is an endocrine disorder. Usually it is caused by taking too much glucocorticoids, such as prednisone, that are often given to control autoimmune or allergic reactions. I very really am prescribed glucocorticoids. It is also commonly caused by a tumor on the pituitary or adrenal gland. Sometimes it is caused by small cell lung cancer. It has been discovered that I have a tumor on my left adrenal gland. The adrenal glands sit on top of the kidneys. The outer cortex of the adrenal glands secrets hormones that control blood pressure and pulse rates, water and salt balance, and the metabolism of fats, proteins and carbohydrates. There isn't a body system that it does not attack. However, it has to be proven that excess cortisol is present. That is not an easy task because hormone levels raise and fall, and because Cushings, especially early on can be cyclic. So right now, it is only a working diagnosis. They are looking at lupus, too, but believe that it is not lupus, because people who have lupus can lose weight. I cannot. As a matter of fact, I am gaining no matter what. That happens in Cushings. Cushings can be so difficult to diagnose that they have to rule out almost everything else, part because some tumors do not cause problems. I have problems with bruising, weight gain (often large amounts fast), increased thirst, water retention, muscle and bone pain and loss, peridontal problems, high white blood cell counts, swollen abdominal lymph nodes, inflamed adipose tissue surrounding the small bowel, ulcers, kidney stones and arrhythmias. My abdomen looks terrible on a CT Scan. So it's sort of understandable why the doctors have thought various illnesses were responsible or that it was even all in my head at first. Being called crazy is often common. They did the CT Scan only after I started complaining about pain that was thought to be kidney stones. I'm working with my docs, but this illness is rare enough that I need to start looking for those who specialist in it. I've contacted the National Institutes of Health (NIH) to participate in one of their clinical trials. All of their trials include treatment, including removal of the tumor.
P.S. It is a slow progressing illness. It kills by knocking out organ systems. Sometimes it is never diagnosed. The autopsy report just says "Heart failure", etc.
