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Barbara's Story

I have been sick for a year now.

In April of last year I had a really bad flu. I caused diarrhea, vomiting for several weeks. I began having a feeling of pressure in my right rib area and thought I pulled a muscle. I went to a doctor for antibiotics. Because of horrible diarrhea, I had horrible hemorrhoids, too. The doc gave me a 'script and ordered a colonoscopy.

In the mean time (I couldn't get an appointment for a month) the pressure turned to aching. My right arm began feeling really heavy, tired, and I began to swell around the side of my right chest wall, below my armpit. All tests came back negative. All films showed nothing. They found 3 herniated discs in my thorasic spine and said I have spondylosis of the cervical spine. I went for several injections in my back. They didn't help at all and my doctor told me everything was "in my head".

I got really mad and found a new doctor. She took one look and said, "Cushing's". She sent off blood work and a 24 hour urine sample. She sent me to an endocrine doc along with the results. The endocrine doc asked my why I thought I had cushings. I told her THE OTHER DOC thought I had it. She said, "you have no black hair on your face or body, no acne, and no purple striae. You don't have cushings". Once again the blood work was fine.

I didn't care WHAT I had, I just wanted the pain in my arm, now my legs, and my ribs to GO AWAY! I had the colonoscopy & endoscopy. Other than 2 polyps, I was fine. They were negative. I went to a Rheumatologist who said I don't have arthritis. Then I went to a neurologist who said I have Myofacial Pain. He couldn't explain the swelling and prescribed Cymbalta.

I went back to my doc who first said Cushings because my legs (calves & feet) started to swell. When you push in on them, the indentation stays for several minutes. She couldn't believe how much my back on the right side was swollen and the fat pads on either side of my neck had swelled. I have gained 30plus pounds. She sent my to KU hospital to a internal med doc. I saw him last month. His first impression was Cushings. I told him I had had tests, but they came back negative. He ordered new blood tests and a urine sample. I saw him today and he said the tests come back negative, but I have the following that make him think Cushings: Buffalo Hump, Tiny purple blood vessel breaks on my back, skin that doesn't heal properly, moon face, torso obesity, muscle weakness, and weight gain since I saw him last. But he doesn't know what to make of the fact that my tests come back fine.

My sister was diagnosed with Adrenocortical Carcinoma in 1997. She died in 1999. I know how rare her disease was, but I can't believe he can't tell if I have this or not. He said time will tell and they will repeat the tests if I have any more symptoms.

Is this normal for anyone else?

Thanks for listening, Barbara

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