Current events.

I haven't really been talking much about my recent health issues online because I think some things should be kept private, but since this journal is about my health issues, it's time to update everyone on what's been happening.

As I stated before, I started seeing an endocrinologist in April after my neurosurgeon suggested I get my pituitary gland checked out. Now from a technical standpoint, she was through. She ran all the tests that she could. On a personal side, she was not a great doctor. She was very distant, not really attentive and didn't even bother to examine me when I had my ONE office visit with her. She didn't look at the marks or the lump or the loss of hair. She took my pulse and listened to my lungs and that was about it. Then she sent me off for all my blood tests and MRIs and whatnot. I already stated that it took FOREVER to get the results and even then, they weren't clear. Finally I just had enough and kind of resigned myself to this life of mine.

Then one day, my mom was watching TV and came across the show, "Mystery Diagnosis" and there was a lady on there talking about being diagnosed with Cushing's Syndrome. My mom noticed immediately the similarities between her and myself. The lump of fat between the shoulder. The weight gain in the truck area. The skinny arms and legs. Even the skin tags around the neck. The similarities were just too much to ignore. So my mom told me about it and told me that I should research for a specialist in this area because I wasn't going to get any care here in Brevard County. So the first place I went to was University of Florida, since I got my oncology care there. I found a neurosurgeon that specializes in pituitary tumors who also works with an endocrinologist on Fridays. I sent an email to him and expected to hear from his secretary within a week or two. The next day, my phone ring and it's a Gainesville area code. Thinking it was my oncologist, I picked up and it was the neurosurgeon I emailed yesterday. The doctor actually call me himself and spoke to me about my issues. He agreed that things weren't right and wanted to see me. So I made the appointment July 2st to see him and the endocrinologist.

I went up to Gainesville on July 1st because I had to see my oncologist for my checkup. I got AMAZING news that on the cancer side, my health is all clear and I have graduated to once a year checkups! Then my mom and I spent the night and got ready for my appointment the next day. So we get up there at 11am and sign in and all that jazz and the next comes out to call my name. It ends up being my Uncle Basil! He's an LPN that works in the neurologist office. So we got to catch up with him while getting checked in. Then we saw the neurosurgeon, Dr. Roper. He was very polite, looked at my MRI, listened to my symptoms and checked me out. He does agree that the pituitary is a bit swollen but it's nothing severe yet, so that's good news. Then I saw the endocrinologist, Dr. Oliver, who again, listened to everything I said, looked at pictures I provided, read my list of symptoms, even looked at all my marks and made me take my hat off so she could see the hair loss. She does admit that something is not right but warned me that Cushing's is very hard to diagnosed and sometimes it takes years but she promised to do everything she could to find an answer for us. She had my labs redo because the lab down in Melbourne completely screwed them up and none of them made sense to her. So I got my blood drawn, got a prescription to get my cortisol tests at a different lab down here and went home.

Then about two days ago, my oncologist office called with my PCR results (leukemia test) and that came back great but she then told me that my ACTH is very low and to let my endocrinologist know about that. That's got me nervous because a low ACTH points to adrenal failure, which is caused by a tumor. But I called the office and let them know about it so we'll see. I get my first midnight cortisol testing kit on Monday. I have to do it three times at random days and send them in.

I feel better knowing that I'm in the hands of specialists. They are in the top of their fields and I know that they will find out what's causing all my symptoms. I am hoping and praying that by this time next year, my health will be MUCH better or at least we'll know what we are dealing with.