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Lori B's Story...

My problems began in the summer of 2001. I had been having pain in my face that was diagnosed as sinus. I had 2 surgeries within 6 weeks, and seemed to be cured. Around that time my blood pressure started to go up, and my primary doctor started trying me on all different kinds of medicine. I also started to gain weight, which I thought was due to the prednisone I was taking for my sinus troubles.

The primary doctor sent me for an EKG, and treadmill stress test, which were normal. He dismissed my high pulse and high BP as hereditary, as there is heart disease in my family. I figured that if they got my BP under control I was fine. Wrong. I continued for a couple of months doing O.K., and then one day woke up with major pain in my back. That was diagnosed as a sacroiliac strain and I was given pain pills and muscle relaxers. The pain soon spread to my right groin area, and my gynecologist decided to do a CT scan of my pelvis.

During the scan they discovered cysts on both of my ovaries and a small mass on my right adrenal gland. They told me that the mass was nothing to worry about. The GYN removed my right ovary in July 2002. The incision got infected and took a very long time to heal. The pain did not go away, and the GYN thought I was wanting pain pills. I switched doctors and the new doc sent me for another CT scan. That showed the mass to be 1 x 2 cm. She referred me back to my primary doctor.

I should say that during this I was becoming heat intolerant, and every time I go outside my hands swell. My BP was becoming unmanageable and my pulse was very fast. I was gaining weight in my face and abdomen, and was (am) very tired. Still working full time, and having the added problem of not being eligible for promotion because of my attendance. The very least bit of exertion makes me breathless. In Jan. of 2002 we went to Disney World for 3 days. Now I can't make it through the grocery store.

Anyway, my primary sent me for an MRI of the adrenals and back and the mass had grown to 1.5 x 2.5 and I have a bulging disc at L5.The primary still didn't think the mass was a problem, but I asked for a referral to an endo (HMO's, sigh) and he told me it would take a month, so he was going to send me to a surgeon instead. More wasted time. The surgeon was puzzled as to why I was there, and sent me to an endo. Finally! The endo has tested me for a pheochromocytoma (negative), and thyroid tests all were normal, and so he sent me for the overnight dex. test, which I did yesterday, and something I haven't heard of but will do anyway, which is a 17 hydroxy corticosterone test. He also suggested that I was having panic attacks, but this is more than that. My WBC was elevated, as was my glucose. He sent me back to my primary once again, as my BP is out of control.

I missed 3 days of work last week and went to the ER with my BP. They now have me on 3 different medicines for it, and it is still high sometimes. I have given up obsessing about it and have resigned myself to whatever will happen will happen. My husband thinks I am "psycho" sometimes, and I do have very bad mood swings. I have never wanted to have a disease as much as I want to have Cushing's. Although I don't have some of the symptoms, these are the ones I have: High Blood Pressure, weight gain in my abdomen, face, back and neck. Exhaustion, mood swings, heat intolerance, elevated WBC, elevated glucose, headaches and back pain, almost daily. Will add more when the test results come in.


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