The last 48 hours has been excruciating! I've had the neuro call me on top of his staff - BUT only leaving messages because I wasn't home or missed the call on my cell phone!! GRR! And of course their messages were vague or clueless!! No one would tell me what was going on and I was sending myself into a tailspin of worry! I just kept thinking the worst!! I knew that if they can't find the tumor in my pit gland then it must be ectopic (or elsewhere in my body - possibly cancerous). I did NOT want to think that. But it was hard. I just kept breaking down, thinking how unfair this was.
But finally last night Dr. E called me and actually spoke to me. It was 9:45pm. But I didn't care. I'm just glad he called. I woulda spoke to him at 2am!! In any case, he said my tests were "equivocal" in that it didn't show there WAS a tumor, but there didn't show there WASN'T either. My labs and everything else at this point are inconclusive. He doesn't want to move on to surgery which could cause more risks than just waiting to make sure Cushings is what is really causing all this.
He does not think it's ectopic or of adrenal nature. He mentioned that it could be pseudo-cushings (which I don't think it is) or that it's just in the earliest stages. He's never seen anyone this early with Cushings, so he doesn't know for sure. So he wants me to go back through the testing regime, adding in some new and more "progressive" tests. So I will work with my endo here in NJ for that. So it's not GREAT news, but it's not bad news either. It could've been much worse. So I'm at least much better than I was 24 hrs ago.
Tomorrow I see my endo (which is unheard of since she sees people like 4+ weeks out at a time). We'll decide what tests I need to do next. Hopefully it's productive and this dang tumor shows itself soon. But at least I don't feel like my life is on hold!
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