For some reason all my specialist appointments (well, my 2 specialist appointments-epileptologist & endocrinologist) end up within a week of each other, consistently. Almost always.
Last time around, the epileptologist one went kind of like this. K is me, N is neurologist:
N: "So have you been having seizures?"
K: "Yes, especially when people flash lights in my face-because people are inconsiderate asshats, this happens a lot-or when I have to sit under a fluorescent light while the lecture slides are presented from a computer hooked up to a projector and they have a blazing white background!"
N: "And what do they feel like?"
K: *Insert 30 minutes of describing the spaciness that is an aura, the hell-if-I-know that is a partial complex seizure, and the wanting to die that is the postictal state here*
N: "So has anyone told you what they look like?"
K: "....yes. And here are phone pictures of me postictal as postictal gets. I don't remember taking them. Well, I remember the day after one. Seriously, I wanted to die."
And then she wanted to do all sorts of putting my meds into approved, ish, high ranges. OK fine whatever. Insert explanations of how all this can go wrong or right here. Exciting stuff.
Epileptologist this time:
N: "So have you been having seizures?"
K: "Only the triggered ones..."
N: "and how often is that?"
K: "Whenever entitled inconsiderate people decide the 'NO FLASH PHOTOGRAPHY' sign at swing dance doesn't apply to them & I can't chase them down and tell them they suck fast enough."
N: "...doesn't someone else do that?"
K: "NOPE! The person who is supposed to doesn't like making or enforcing rules. She was pissed enough about putting up the most passive sign in the history of the world. It has a smiley face FFS." (yep, I swear in the doc's office).
N: "That's unfortunate. How is school?"
K: "I got a 4.0 this term."
N: "What was your major again?"
K: "Biology/premed."
N: "Fantastic! So I don't think we need to do anything with your medication, but they do need to be more aggressive with that flash photography thing."
K: "...yeah, that's something that isn't going to happen. I'm taking the lack of enforcement as permission to be as nasty as possible about it."
N: "Oh those poor photographers. Have a great holiday & I'll see you in 6 months!"
Endocrinologist last time:
E: "It says you have adrenal insufficiency. Why do you have adrenal insufficiency?"
K: "No one knows. No tumor, no surgery, it's a mystery."
E: "We should find out. And change your steroid. And find out."
K: "I'm not opposed to changing my steroid, but I'm not sure any tests would show anything we don't already know...that I don't make ACTH."
E: "We should find out! *insert making plans for another ACTH stim test here. And wanting to look at my old MRIs, which are maybe 18 months old*
K: "I'll do it, but there's unlikely to be any mystery solved at all..."
E: "But you had an unexplained crash! That's unusual! We need to solve it!"
K: "Well, suing the school is stressful and I was probably sick and didn't notice. It wouldn't be the first time."
E: "We should at least look!"
K: "If you insist, Doctor House."
E: "What?"
K: "Nevermind."
And I did have the ACTH stim test and a draw of every hormone known to man and some that I'm pretty sure are just hypotheses at this point. The results were nearly identical to the first time I had one.
This visit:
E: "You switched your steroids? Is that going well?"
K: "Yep."
E: "You know the sick day rules?"
K: "Yep. And the surgery rules. And the vomit and injury rules"
E: "OK good. Your tests indicate that your ACTH release capacity is about 15% of normal & your adrenals function at about 50%"
K: "Alright."
E: "What do you do for work again?"
K: "I coach gymnastics..."
E: "Where?"
K: "NERDYNAME Gymnastics in TOWN"
E: "And what's a good age to start that?"
K: "...whenever someone has an interest...we have Mommy & Me through adults..."
E: "I'm asking because I'd like my daughter to have more activity & gymnastics isn't weather dependent. Do you have a website?"
K: 0.o *writes down information*
E: "We will check that out. See you in 9 months!"
K: 0.o 0.o 0.o all the way back to the lobby
Yeah. It's always exciting. And then there's new general practitioners.
GP: "It says here you have Ehlers-Danlos Syndrome."
K: "Sure do."
GP: "So what kind? Are your big joints or little joints more effected?" *looks waaaaay too excited*
K: "What used to be called type 2. I'm a 9/9 on the Beighton scale & am lucky to not have developed much pain, even though I dislocate easily."
GP: "And skin manifestations?" *Is seriously bouncing up and down."
K: " I'm covered in mystery bruis...oh, wait, you want to stretch my skin, don't you?" *hold out forearm* "Go for it."
GP: *looks embarrassed, then stretches my forearm skin & I think it made his week*
Yeah. Exciting.
4 comments:
Oh, you have to forgive us doctors. We live for finding unusual stuff.
For a good illustration, there was a great episode of Northern Exposure where the doctor made a diagnosis of Zollinger Ellison, and then got depressed because no-one understood what an amazing catch it was.
I saw a kid with pica earlier this week, and diagnosed one with porphyria cutanea tarda yesterday. I'll be telling all my colleagues about that for weeks!
But stretching your skin is fuuuuuun!
I thought the GP's skin stretching thing was hilarious. He really REALLY tried to cover everything else first. He's a resident & I bet what he heard about EDS in school was that he'd never see it ever.
Having a mom whose a nurse, I know all about the "Oh, something I've only heard of, lemme see." The GP thing is hilarious, but my (adopted) aunt (also a nurse) has a story about her during nursing school, how she got an abscess that needed draining, and everybody in the school seemed to drop by to "check it out".
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