Kirby's Story...

Hi, I'm Kirby and I'm 23 years old. My journey to a diagnosis has been frustrating and difficult, I'm tempted to say "long" but I see so many others on this board who have been at this a lot longer than me. Let me say it's felt like forever...

I was an active teenager, softball and dance were my two favorites. At about age 16 things started to change, I gained weight and lost interest in everything around me. I no longer wanted to play sports, dance, or even hang out with friends. The depression and anxiety worsened as did the weight gain. By the time I turned 21... the time of my life had turned to pain, fatigue, and severe depression. I was on the stongest dose of Welbutrin that could be prescribed, Zanax for anxiety, Meds for the IBS, a therapist, and a number of doctors who told me to "lose wieght" "exercise." I followed their orders and I took their pills... I've had plenty of diagnosis in between as well.

I signed up for a Human Anatomy Class, which actually changed my whole life. I was flipping through the chapters when I came across a picture that reminded me of myself. I read the information and found this was a disease caused by a tumor and people with these disease were depressed, anxious, obese, had hair in places they didn't used to, had a moon face, a buffulo hump, diabetes and so on... all things that fit for me. I went to my Dr and asked for my cortisol levels to be tested... she was convinced this was not my problem, it took 2 months just for her to write the script for the test. When it came back, shock of all shocks... my cortisol was high, 3 tests later I was in an endocrinologist office as he was ordering a CT scan of my abdomen...

negative...

Then the MRI, and it was positive... I think I'm the only person who's ever smiled when they found out they had a brain tumor. It just feels so good to know you're not crazy... I have an appointment with Dr. Ludlam and Dr. Barnwell next week (Nov 29th) and I will do the CS Sampling to see more about the tumor. I'm finally going to get answers!

I wanted to thank everyone for reading my bio and posting your own. It's so nice to have a community to assure you that you really aren't alone.

Update December 10, 2006

Went to Portland and OHSU, had the PSS completed, and DEXA/CHR. Met with Dr. Ludlam and associates. The appointments went well. Dr Delico (who is Dr. Ludlam's partner now)said that almost 80% of Cushing's cases were pituitary but after examining me she said "for you, it is 90%" indicating I look like the poster child for Cushings. I also met with the neurosurgeon and we set up a surgery date, January 25th!!!! Dr. Delico still wanted the results of all my tests before she was willing to send me to surgery, but I left feeling relieved, I mean people were FINALLY doing something to help me.

Fast foward to this week and I receive a phone message from Dr. Delico. Apparently my PSS came back "slightly positive" (whatever that means) and I now have to repeat the DEXA, more blood tests and the 24 hour urine tests... I'm very dissapointed.

I'm starting to get that hopeless feeling again... Just hope I can get it all done by the end of January... I WANT that surgery date to stay...

Thanks for reading, I'll update more later.

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