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Roberta (Berta)'s Story...

I have been sick my entire life, since birth. I am 27 years old. I, like others, have had the general symptoms of Cushing's Syndrome for as long as I could remember. I have been from doctor to doctor trying to figure out what was wrong with me.

At 16, I was diagnosed with Asthma, chronic bronchitis, and diabetes type 2. I began getting cysts and boils all over my body because the infection was too much for my lymph nodes to handle. It was very common for pus to just start leaking out of my body anywhere. At 21, I was diagnosed with kidney disease and my white blood cell count was abnormally high. At 24, I had a lump removed from my left breast and of course there have been many "cancer scares" during this entire time. I literally was not expected to live past 27 years.

My older sister went back to nursing school to help take care of me in my declining health conditions. She was in the middle of studying diseases of the endocrine system. My sister "diagnosed" me with Cushing's Syndrome before any one of the 10 doctors I had been to or come in contact with over the years. I went to my doctor with the news and he agreed to test for it. Sure enough, my blood work and 24 hr. urine came back with and extremely high cortisol level.

My doctor, Dr. Amir Hassan, sent me to the medical center in Houston where I met Dr. Victor Lavis with UT Physicians at Hermann. They were both great. I of course had to do the numerous tests again and a third time along with several CT scans and MRIs. The scans and MRIs showed nothing, however the blood work suggested a pituitary adenoma. I then went to a neurosurgeon, Dr. Willian Gormley. He treated me with respect and helped me get through the next few months. I was diagnosed late October and had my surgery on December 13, 2001. My ENT was Dr. Joseph Chang. I had a great set of doctors and I appreciate all they did for me.

I went through all the withdrawal with my body rejecting everything except Del Monte Peaches in a can. I should have been getting better, however my symptoms are coming back. My blood sugar is creeping back up, my blood pressure is headed that way too. I've gained about 45 pounds in the past couple of months. My body acne is returning and my hair is falling out. I grow more and more tired as each day passes. It was time for my 6 month evaluation and my MRI came back positive for a 3mm mass in the same place as before.

So, now I begin round two of this battle. I've done blood work, 24 hr. urine, and I waiting to meet with my endocrinologist once again to get results and compare past MRIs. It doesn't matter that I might have to do this all over again, because I will have more support now with people who understand what I have been through and what I will go through in the next few months. Thanks.

If you are reading this and do not know what is wrong with you and you have several of the symptoms listed for Cushing's syndrome, I strongly encourage you to educate your self and don't take 'no' for an answer. If you have to...'doctor hop' until someone decides to help you and work with you and not just tell you that you eat too much or that you are a bad diabetic. This Syndrome 'looks' like everything else is wrong. You have to know the symptoms. I go to a teaching hospital and I make sure that at every appointment that I educate the students and the residents on recognizing the symptoms of Cushing's Syndrome. I almost died because no one figured out a long time ago that all these symptoms when put together is Cushing's and it is dangerous left undiagnosed. Godspeed to you all.

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