Back to OHSU, trip #3
Well, Dr. L called me last night to go over last week. I'm always impressed with his dedication. He called me at around 5:30 pm, on a Friday night no less.
So, I failed the dex test. No big surprise there. But since my tumor shut off an hour or so after taking the first dose, he's not sure that I'll ever "pass: that test. We are going to give it one more go though.
I had more high UFC numbers while I was down there, as well as one high midnight cortisol. My ACTH was way out of range as well. But no good on the salivaries.
So. I'm headed back to OHSU for another full week's test. This time there will definitely be a CSS involved.
He thinks he has enough to take my case to the Board. But he's not 100% sure. Part of the problem with being cyclic is that it's so hard to catch the numbers consistently. Except for the UFCs being 3-4 times normal, the other numbers could be dismissed as "slightly elevated."
If you take a group of florid Cushies and a group of healthy folks and have them test the same way, you will get a range of numbers that over lap. The Healthy folks will have some high numbers and the Cushies will have some low numbers. Most of my numbers fall in the over lap range.
So, I'll be heading back to OHSU for the full week treatment again, on the first available time slot.
We talked about me turning into the freaker/tweaker princess. Chris had explained to him a little how I was, and I tried to hammer it home to him how aweful it is when I’m like that. It goes beyond being manic, it goes right into hypermania. Hyper-mania isn’t even a recognized word, but it is sure how I feel when I’m in the teeth of one of those episodes. He told me that I was going to hate him, but he doesn’t want me to make them stop, not yet anyway. He wants me to test, test, test. Because I typically have a mini crash right after one of these, the UFC won’t do much of a good test. So, I’ll need to go have blood work done. Because I don’t have a good grasp on reality while I’m in the middle of one of these episode, Spud has been directed to take me to the lab so they can do my blood draws.
I had originally wanted Spud to give me a big stiff drink. I showed him how to make a light and refreshing rum drink, but he wasn’t terribly impressed. Heh, not my Spudders. But Dr. L put the kibosh on that plan, since he wants me to test. I don’t’ want to test. I want to throw a world class temper tantrum at the thought of testing while one of those episodes, when all I want to do is make it stop.
The appointment with the neuro. Dr. Fosmire, I think went well. He’s not quite sure what to do with me, given my Cushing’s. He put me on Topomax for the headaches, and he’s ordered a full MRI & MRV test. At OHSU they just did an MRI of my Pit area, he wants to check to see if I have a problems with my arteries in the head. He thinks that the washing-machine in my head might be a blood vessel near my ear, but he couldn’t explain why it would switch sides of my head. He’s going with the “atypical-migraine” theory. At least until the films come back.
Well, Dr. L called me last night to go over last week. I'm always impressed with his dedication. He called me at around 5:30 pm, on a Friday night no less.
So, I failed the dex test. No big surprise there. But since my tumor shut off an hour or so after taking the first dose, he's not sure that I'll ever "pass: that test. We are going to give it one more go though.
I had more high UFC numbers while I was down there, as well as one high midnight cortisol. My ACTH was way out of range as well. But no good on the salivaries.
So. I'm headed back to OHSU for another full week's test. This time there will definitely be a CSS involved.
He thinks he has enough to take my case to the Board. But he's not 100% sure. Part of the problem with being cyclic is that it's so hard to catch the numbers consistently. Except for the UFCs being 3-4 times normal, the other numbers could be dismissed as "slightly elevated."
If you take a group of florid Cushies and a group of healthy folks and have them test the same way, you will get a range of numbers that over lap. The Healthy folks will have some high numbers and the Cushies will have some low numbers. Most of my numbers fall in the over lap range.
So, I'll be heading back to OHSU for the full week treatment again, on the first available time slot.
We talked about me turning into the freaker/tweaker princess. Chris had explained to him a little how I was, and I tried to hammer it home to him how aweful it is when I’m like that. It goes beyond being manic, it goes right into hypermania. Hyper-mania isn’t even a recognized word, but it is sure how I feel when I’m in the teeth of one of those episodes. He told me that I was going to hate him, but he doesn’t want me to make them stop, not yet anyway. He wants me to test, test, test. Because I typically have a mini crash right after one of these, the UFC won’t do much of a good test. So, I’ll need to go have blood work done. Because I don’t have a good grasp on reality while I’m in the middle of one of these episode, Spud has been directed to take me to the lab so they can do my blood draws.
I had originally wanted Spud to give me a big stiff drink. I showed him how to make a light and refreshing rum drink, but he wasn’t terribly impressed. Heh, not my Spudders. But Dr. L put the kibosh on that plan, since he wants me to test. I don’t’ want to test. I want to throw a world class temper tantrum at the thought of testing while one of those episodes, when all I want to do is make it stop.
The appointment with the neuro. Dr. Fosmire, I think went well. He’s not quite sure what to do with me, given my Cushing’s. He put me on Topomax for the headaches, and he’s ordered a full MRI & MRV test. At OHSU they just did an MRI of my Pit area, he wants to check to see if I have a problems with my arteries in the head. He thinks that the washing-machine in my head might be a blood vessel near my ear, but he couldn’t explain why it would switch sides of my head. He’s going with the “atypical-migraine” theory. At least until the films come back.
posted by Vinesqueen at
2:22 PM
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