Friday, February 13, 2009

Lori (Frog), Ectopic Cushing's

My name is Lori. I was diagnosed wtih Cuhsing's Syndrom in Dec.

Despite all the testing, we have yet to locate the source. It's been very frustrating and my symtoms seem to be getting worse. My doctor is in contact with a Dr. Neiman out of Bethesda in the hopes of getting me into her clinical trial with the PET testing using some new drugs. In the meantime I wait.

My doctor thinks it may have started about 4 years ago. I had more acne around my jaw line than I ever did as a teenager. My weight started to creep up so I started WW. Even though I lost 22 lbs, my face was very much the "moon face" and I couldn't understand why. Bouts of depression had my weight going back up again despite WW and walking 3 miles 4-5x week. I had been in and out of the doctors office.

I had severe pain in my right hip, had an MRI and it showed lots of fractures in my sacram, pelvic bone and 4 fractured ribs. My doctor thought I was being beaten at home because I could not recall any "trauma" to have caused all of this. So the tesing began and I was deficent in calcium, Vit. D, potasium. My bone density tests came back way abnormal for a 42 yr. old, my muscles are extremely weak. So I was diagnosed with osteoperosis and put on supplelments and did lots more testing until my doctor suggested Cushings and sent me to an endocrinologist and more testing began.

Now I'm in a holding pattern to figure what to do next. Any one else been in this situation?

Most ectopic patients the tumors are found in the lungs but the CT scans didn't show anything, nor did the CT of my abdomen or pelvic areas. Nothing on the adrenals or pituitary. I've not been given any medications to help lower the cortiso levels in the meantime because I have high blood pressure as a complication as well.

Any information or contact with anyone in my same situation would be an enormous relief. Hopefully I'll be hearing something soon from my doctor to set up some kind of treatment plan.

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