Keeping Score

We have certain expectations when we visit a doctor.  We expect them to be cordial, empathetic, thorough, helpful, infallible, perfect.  Wow, that’s a lot of pressure on your poor doc whose brain and body is probably fried from being overworked and overextended.  That’s not to say I haven’t had unreasonable expectations when it comes to my medical team, but consider me schooled – doctors are humans too.

I complained frequently that none of my doctors have actually read any of my history.  Rattling off the same thing every time I have an appointment is goddamn annoying and exhausting.  My brain only has so much juice.  The only one to do so was a psychiatrist who had a consult with me last year.  He said I owe him money for carpal tunnel surgery.  Ha!  Most of them look back to their previous notes, but that only tells them a sliver of the story.  There is a bunch of important stuff hidden in that vast abyss of notes, records, and results.  I’ve even mentioned that I was perturbed that they hadn’t taken a few minutes to skim through my stuff.  Unlike me, they don’t have the luxury of almost infinite free time, so that was me being a jerk again.

Here’s the thing; I haven’t thoroughly read them all either.  I could have saved myself some embarrassment had I spent just a little more time absorbing all of the information.

I recall a particularly uncomfortable hospital admission last year which was right around the time my neurological symptoms were at their absolute worse.  I could barely walk, couldn’t feel my face, choked on food and drink constantly, and was all around miserable.  I was admitted earlier in the same month for partial paralysis that turned out to be thiamine deficiency, but even after three days of thiamine infusions, it was clear something was still seriously wrong.  I got planted back in that shit-hole for neuro stuff a second time.  I had labs drawn during the first neuro admission that showed that my copper level was low, and it was postulated to be the cause of some of my symptoms.

I saw about 10 people from neurology during that stay.  Residents, Fellows, and Attendings.  During the second evening, I was given eye drops that felt like ghost peppers had been dropped into my peepers.  I asked what they were for before they were used, and the nurse said she didn’t  know – the doctor had ordered them.  Okay, which doctor was the sadist?  So I asked every single doctor I saw from then until discharge, and they didn’t have a clue what the hell I was talking about.  Now, I know I was all kinds of fucked up, but I didn’t imagine having fiery chili hot sauce being squirted into my eyes.  I even raised my voice (straight up yelled) at my follow-up appointment with my dickface neurologist about this because he too had no clue what the fuck I was referring to.  I’m sure that was one of the numerous times he told me that my anxiety was likely the major cause of my neuro symptoms (this was before my conduction studies and biopsies).  Yeah, fuck you buddy.

Currently, we’re still working under the assumption that my neuropathy is primarily a result of long-standing copper deficiency.  My copper level is more or less normal now, but the damage is likely permanent.  Who knew something with such a small requirement, and something we don’t even think of as an essential nutrient, could cause such major problems?

I was going through some old cell phone pictures that I had dumped on my computer
(you wouldn’t believe how many pictures of my legs and feet there are, lawdy), and found some of my discharge summary from my last neuro admission, hence me writing this completely pointless post.  The actual summary was stolen by my gastroenterologist at the time, and I assume it has been destroyed by now since they don’t keep paper files.  It was probably scanned, and is now currently kicking around in a storage server somewhere in the United States.


I snapped pictures and cropped them to point out the stuff that was pissing me off, because I was ranting to my husband on the other side of the world through my phone about how much was wrong with this hospital.  I had elevated liver enzymes which they called transaminitis.  That term literally means ‘inflammation of the transaminases/hepatic enzymes’.  The enzymes themselves can’t be inflamed, so it’s a dumb word.  I guess it’s easier than typing ‘elevated ALT and AST’.  That was my first issue, even if it wasn’t a valid one.  I was still pissed off that they weren’t telling me shit, so I started nitpicking.

Secondly, they blamed the elevated enzymes and that particular AKI on an amino acid supplement I was taking that tasted like Tang, not factoring in that both Crohn’s and gastroparesis were also pretty fucking bad at the time.  It was nothing but branched chain amino acids with orange flavoring.  It’s essentially the same profile as what they put into the rotten tit juice known as peptamen, but WORLDS tastier.  “But it’s not approved by the FDA”.  So true.  If it were, I wouldn’t be able to afford it.  That pissed me off even more, because if you know me well enough, you know how much I hate the FDA.  In hindsight, that was probably the first clue that I had auto-immune hepatitis.  Though my levels at discharge showed improvement, they appeared that way because I was given so many fluids that my blood was diluted.  They bounced right back up to “transaminitis” after I pissed out three gallons of water and was retested a week later.  I managed to stay out of the hospital for a month until I got admitted again for another two weeks.  Last year sucked.  Continuing on…


Second to last order of business, Omeprazole was listed under active medications that I should continue taking.  I hadn’t taken Prilosec in two years.  I was switched to Pantoprazole/Protonix, and the Prilosec had never been prescribed to me by an MTF.  Where did Prilosec come from?  They gave me Pantoprazole with my inpatient meds, so it’s not like they decided to switch them out on me and got confused because of that.  Again, this is probably me nitpicking because they’re in the same drug class, being PPI’s and all.  One would think that accurately documenting medications is pretty damn important, though.

It took me this long to notice the drug listed between the iron supplements (that I couldn’t take because they made me harf – I told them as much, and they recommended taking more.  Where’s the fucking logic in that?) and Imodium.  What is Apraclonidine?

From Wikipedia, the free encyclopedia
Systematic (IUPAC) name
2,6-dichloro-N– (4,5-dihydro-1H-imidazol-2-yl) benzene-1,4-diamine
Clinical data
Trade names Iopidine
AHFS/ Monograph
MedlinePlus a608005
Routes of
Ophthalmic solution
Legal status
Legal status
  • UK:POM (Prescription only)
  • ℞ (Prescription only)
Pharmacokinetic data
Protein binding 98.7%
Biological half-life 8 hours
CAS Number 66711-21-5 Yes
ATC code S01EA03 (WHO)
PubChem CID 2216
DrugBank DB00964 Yes
ChemSpider 2130 Yes
KEGG D07461 Yes
ChEBI CHEBI:2788 Yes
Chemical data
Formula C9H10Cl2N4
Molar mass 245.108 g/mol

Apraclonidine (INN), also known as Iopidine, is a sympathomimetic used in glaucoma therapy. It is an α2-adrenergicagonist and a weak alpha-1 adrenergic receptor agonist.


Eye drops!  There it is!  I had my answer all along.  Last time I checked, I don’t have glaucoma.  Idiots.  Oh, but wait, keep reading, you snarky gremlin.

Apraclonidine may be useful in the diagnosis of Horner’s syndrome. In Horner’s syndrome, the sympathetic innervation to the pupillary dilator muscle is lost. The affected pupil is thus miotic and the pupillary dilator responds to denervation by increasing alpha-1 receptors. Apraclonidine is useful in this case due to its weak alpha-1 adrenergic properties. When applied to the denervated (and thus hyper-sensitive) pupillary dilator muscle, a super-normal dilatory response is generated in which the pupil dilates to a degree greater than that which would be seen in a non-denervated muscle. This causes the reversal of anisocoria that is characteristic of Horner’s.

Ah ha!  Thanks, Wikipedia!  It was being used to rule out potential diagnoses, because I had/have anisocoria (one pupil is larger than the other).  They were normal in my previous admission, but there’s no apparent pathological cause after a normal brain MRI, so they considered it physiological (normal variant).  I also have horizontal nystagmus that developed in 2013, along with more frequent and severe migraines that sent me into the MRI tube for the first time.  I learned that I’m not as claustrophobic as I thought I was.  Horizontal nystagmus is rapid horizontal eye movements, and since it didn’t resolve upon fixation/focusing on a static object, my doctor assumed it was pathological but my brain was peachy then too.  I suppose my eyes are just crazy, which makes sense given who owns them.


They look pretty fixated beer…I mean here.

Had I actually read this in detail last year, I wouldn’t have picked a fight with my neurologist, and he might not hate me as much as he does currently.  It wouldn’t have fixed telling him I’m allergic to bullshit and assholes, but I have to make that clear to everyone.  Of all of my allergies, those are the most annoying. 😉

Lesson learned.  Read those records, and then read them again.  It might save you from making yourself look like an ass, and that means you’ve got 1-up on your completely disinterested doctors.  Keeping score is also a good idea, because who doesn’t enjoy a little friendly competition?

10 thoughts on “Keeping Score

  1. I totally get it! I just made an appointment with my pcm (who I think is completely out of her depth with my case!) because they won’t give me my synthroid until I do and they want new labs. UGh! (This is the doc that I’ve been ignoring because she wanted a colonoscopy and a YUGE dose of iron….no, and no thank you!)
    I keep folders labeled with each thing. I literally have a “brain stuff” folder, a “hip” folder…..You have to fight back because they think patient = idiot.

    Liked by 2 people

  2. Anisocoria, in the absence of other signs and symptoms, is usually due to the presence of a window or other source of bright light. The eye that is nearer the light source will have a smaller pupil. This is a sign that the pupils are doing their job of regulating the influx of lux. The way to test that this is normal vs abnormal is to move the patient into a darkened room for a few minutes, then examine with a hand-held light without turning on the room lights. The pupils should then be symmetrical. If the asymmetry persists, get an ophthalmology consult.

    Liked by 1 person

    • Yeah! I know of a couple of people who have Meniere’s. It’s a NASTY disease. Wendy, who sometimes comments here, has it. With as much as I go through, I’d rather have what I have than Meniere’s. I’m sure it has a spectrum, as most other chronic illnesses do, but it still sounds awful.

      My guess is my neuropathy was around way back when it started, and it may be affecting my cranial/optical nerves to a small degree. Optic neuritis is sometimes one of the first signs of MS, so the nerves in that area are pretty sensitive.

      Or I’m an alien. That’s a possibility too.

      Liked by 1 person

      • Makes sense. My optometrist mention the eye thing once. And seriously, your disease portfolio is big enough. I dated an alien once (he actually showed me which star cluster he was from). I can definitely diagnose you as not having multiple alienrosis.

        Liked by 1 person

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