So, um, it seems that I had rosacea once (which is basically as descriptive a term as “arthritis” because there are bazillions of sorts and causes and stuff…) and the fact that I no longer get the pimply things with it indicates that it’s burnt out. So the red flaming face is permanent (though it is transient… I mean, that does make sense, really, I’m not ragging on anyone yet). I said, “You know, if I really cared about the redness, I’d have probably come in with the acne looking stuff. But I really have bigger fish to fry… I could fry them on my face that burns to the point it blisters, but my sweet GP thinks we can look at something here and get a clue.”
Or maybe we can’t. I knew two things early on: I wasn’t pushing it here. If this guy reads the pathology, I want him to know what he is looking for, and recognize weird crap in it that we might not have been expecting. The doctors and nurses (nurses are the freakin’ worst for this happy crap) who say you need to advocate for yourself need to tell people the caveat that you can not advocate to a brick wall. They do not have ears. I also knew that I kinda liked this guy, and I wasn’t going to hold back on what I really thought thus far.
First, he gave me the “I don’t like to just punch holes in patients for no reason, and specialists are good at one thing, but your GP has to be the one to tie it together from the symptoms.” Right, and I don’t think my damn skin is doing any of this, but my GP has worked her ass off and endured and toughed it out and actually has been a real friggin’ trooper. So there. At this point, the only difference between her and I is that I feel like shit the majority of the time, and she gets shat upon by her specializing peers who wonder why she can’t just pull the answer out when they immediately shoot down whatever she asks them to work up further for some idea she has.
He kept saying, “MS… Have you been worked up for MS?”
Yes, dammit. I have had so many MRIs that I stick to the damned fridge. And I am getting another, I know, and that’s fine, but… I also know (god help me) that chances are good based on my medical history and family history that it will come back, eventually, off. And here’s what I’ll be told: “Test things enough, and there will be anomalies.” Right. I mean, not artifacts on the images… But sometimes things look weird as you age. Well, jeez, I ought to be 175 by this point.
I have, I told him. And Lyme. (“Lyme is the new syphilis!” he says. Ooookay. Well, for the record, they tested for that as well, because lupus and various others tend to return positive syphilis labs. But I don’t have the syph, either.) I don’t have lupus. In fact, usually a woman my age should have, here and there, false positives on those tests. Um, I did have a false, weak, rheumatoid factor….. which never showed again, and once I had a trace ANA that wasn’t enough to read on and never showed again. Five years ago. I have had these tests a good couple dozen times. I don’t have anything autoimmune in nature, it would seem. At least, that they have a blood test for. I don’t have herpes simplex/varicella/complex/difficultis/dumbassedis either. I am apparently in awesome shape.
Oh, sorry, did I leave a handful of hair on your chair there? Damn. Well, except for the diabetes insipidus that no one can explain, the fact that my face is slumping over (oh, he did have a hell of a time with that trying to… do whatever they evaluate on your face. I could tell. He was screwing his face all up and taking my glasses on and off and stuff.) And my thymus… We’ll get to that.
I went in and I told him that my sweet GP wanted to get a skin workup for histiocytosis sorts of things, and I dunno, stuff that shows when you have facial nerve screwups and the part of your pituitary stops working that no one ever has stop working unless they’ve got some weird stuff going on (and the motion sickness threatens, but hasn’t hit too bad yet).
But he won’t do that, because…. Well, like, sarcoidosis is a lung thing, mostly, for instance (yes, and the neurological form is a sometimes visible and can present with all this stuff, much the same way the histiocytosis and nastier immune things do). Are my lungs okay?
They function. I mean, my oxygen saturation sucks sometimes, but my function tests are damn good. And I have that nodule, but… It hasn’t grown, they just went in and took my thymus out as it was enlarged.
He says, “Why didn’t they biopsy the nodule?”
As my head reels over the answers I could give… Because I don’t smoke, so there’s less reason to be concerned about a fairly hefty but not fast growing buddy mysteriously showing up in my lung at a young age. Because they just would have done the same thing as they did with my thymus, which was good and all, but didn’t tell me more than I don’t have cancer, which… I mean, that’s good and all…
Then he says, before I can ask him why the hell he’s asking me that, “Wait, your thyroid, or your thymus?”
Thymus. The one that usually just behaves for people and fades away, not the one they’ve done another million completely negative tests on.
“Do you have low Vitamin D? Did they take all four?”
Ugh. No. No, dude. Not my thyroid, not my parathyroids, my thymus. They might have nicked a parathyroid or two, for all I know, I guess those little bastards are sneaky. But I only have one thymus. If I had four thymuses, I… I’d be in the veal business.
And I have had low vitamin D. Forever and ever amen. And I have high end of normal calcium, and taking supplements doesn’t do much. Did the horse-pill supplementation for a full year, my Vitamin D went from 4 to 8. My calcium went from 9 to borderline high 10.6. My parathyroid function was normal.
I shouldn’t be able to tell anyone this. I could. He said, “Was the Vitamin D over the counter or…” No. 50.000 IUD. Once a week for a couple months. Then every other week. For a damn year. If there’s something wrong, it’s screwing with my Vitamin D (or how it shows up on tests), it’s not because of it. Just like… my problem doesn’t originate in my skin. I know this. We need to find out what the hell it is.
MS has been associated with low Vitamin D.
Yes. I know, and so have a million other things — some of which show up systemically and cause many of the problems — the weird, objectively observed problems — I have now. And most have been ruled out. Like MS.
He said (I love when doctors do this… Poor general practitioners must have such a complex. First, they’re told they’re the first line of defense, that they are there for managing “common” stuff — sore throats, strep, cuts — and leave the brain surgery to the brain surgeons. You are generalists, you plebes… and then they get this next bit…) “Specialists are studying their specialty areas before they leave med school, so they have a myopic view. They don’t put together the big picture, that’s the job of the GP. They see all these overlapping symptoms and start looking at the common suspects.”
So specialists have mostly arcane, useless knowledge, and generalists are told simultaneously they need to know it all, but they don’t know jack? Wow, medicine sounds like a great job. I love abuse!
I said, “Yes. My GP has been here for years with me. She has moved through all these common suspects. Repeatedly. They are not what is going on. She has pulled some pretty impressively weird suspects out too, and they do fit, and they still fit, but no one will look further and she can’t know it all because nobody knows it all. She’s saying something is very wrong, we need to put it together, and no one can help her gather the information she needs. It’s like I’m the damn windfarm she wants to build, and every one specialist she refers me to is like, ‘Not in my completely homogeneous view of the ocean. Great idea though, but maybe so and so should do it.'”
So, good news is, he did get the point. I mean, god help me, they usually don’t. I also probably will end up with a skin biopsy. It’s not as invasive, they are often revealing. And I really did kinda like him, I mean — he got it — but he won’t be doing it even if he’s an option.
I got some steroid cream stuff for the burn. It seemed to help yesterday. Steroids, incidentally, help with inflammation. Which I simultaneously have but don’t have. Schrodinger’s inflammation? Or maybe a biopsy of an inflamed area would reveal why.
And we’ll get to last night’s talk with the sweet GP later. I didn’t tell her I saw this guy this early. I heard her use some colorful language when it came to ordering MRIs and why was she asked to when… Well, if they thought I had a TIA, shouldn’t they have kept me?
And I said, “Yes, but I wouldn’t have stayed. It’s not a TIA. I know this. This has happened before.”
She said, “Yeah, I know. I know. And… your microscopic urinalysis is back. And we have more atypical cells again, so… I mean… The big thing is it’s probably not…”
Yeah, it’s probably not cancer. It’s probably not my bladder. I’m guessing kidneys, based on the lovely flank pains I’ve had off and on since last fall. And as I said to the dermatologist, “There are lots of things that can make your life miserable, or kill you, that aren’t cancer.” Truthfully, this is sorta more what I expected. I thought since I hadn’t heard, maybe I dodged it this time around.
I assured her I wouldn’t buy any agricultural land before I see her Thursday.