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Mika Perceived@perceived.bsky.social |
13 followers 68 following 164 posts
Puzzle lover. Curious. Hopeful. I believe the answer to a six-year+ undiagnosed neurological condition might lie in my imaging. Asking the right questions is worth the risk of being wrong.
perceiveddistinctions.blogspot.com/
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Mika Perceived
@perceived.bsky.social
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(again more superior to the last images; maxilla/palate territory! But you can't see the hard palate maybe-lesion yet, it's even *more* superior. OK, TV now.)
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Mika Perceived
@perceived.bsky.social
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This one is called "R side soft tissue restricted diffusion maybe". I thought it was artifact at first, and now, I really must go watch some Netflix.
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Mika Perceived
@perceived.bsky.social
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Two frames directly superior to the last, T2 on the left, FE on the right
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Mika Perceived
@perceived.bsky.social
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I couldn't leave you with those tepid CT frames. Here's an April 2020 MR C-spine of the same region and below.
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Mika Perceived
@perceived.bsky.social
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7/7 Studies on dicomlibrary aren't loading, so: frames from 2019 maxillofacial CT, then I must take a mental health break and watch the very last episode of Girls 5Eva🥲 These are unimpressive, but it's five years since, w new swelling and recurrent roof of mouth sore. Hence heaviness, doctor msg.
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Mika Perceived
@perceived.bsky.social
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6/ I doubt there's anything "dominant" about my little findings, though a neuroradiologist did at least corroborate the sublingual stones (They're hard to miss, though not noted on the CT report). I guess this requires visual proof...
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Mika Perceived
@perceived.bsky.social
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5/
(Sjogren's) "Patients are prone to superadded bacterial infection and have an increased risk of Non-Hodgkin's lymphoma of the salivary glands and any dominant salivary gland mass must be viewed with suspicion and biopsied."
academic.oup.com/imaging/arti...
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Mika Perceived
@perceived.bsky.social
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4/ I wasn't convinced I could or should waste time looking for a connection with the sublingual salivary stones. But there it is: Glands.
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Mika Perceived
@perceived.bsky.social
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3/ Did you know there are salivary glands in the hard and soft palate? I didn't. So despite my ability to trace a tentative visual connection between the roof-of-mouth dubiously-possible-lesion and the maybe-less-dubiously-possible L side periosteal reaction...
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Mika Perceived
@perceived.bsky.social
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The rheumatologists I've seen have treated seronegative Sjogren's Disease as an exceedingly rare entity; only my doctors at Mayo Clinic seem to believe I have it. So despite their expertise (one is a prominent leader in Sjogren's research), I have maybe not given it due consideration.
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Mika Perceived
@perceived.bsky.social
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I wrote to my doctor. I don't want this account to be such a pill, but I'm going to assume anyone reading is an adult and reading of their own free will.
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Mika Perceived
@perceived.bsky.social
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What do you do when you are troubleshooting, and there are three possible directions to take? 1. Research possible cause A, 2. Research possible cause B, 3. Solicit help, which requires you to decide who to ask despite mistrusting anyone else to give it due attention.
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Mika Perceived
@perceived.bsky.social
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I'm putting the finishing touches on a blog post about salivary stones! At the same time trying to organize reading materials.
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Mika Perceived
@perceived.bsky.social
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Lolol, I love this one! The best part is they look so chill about it. That's how you know it's chronic ☺️
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Mika Perceived
@perceived.bsky.social
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Have you read much about autism and proprioception?
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Mika Perceived
@perceived.bsky.social
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I've been on a brain break, sort of. Still reading up on skull base anatomy and getting lost in a network of radiological rabbit holes, but not much left for (cogent) communication.
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Mika Perceived
@perceived.bsky.social
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Me tooo! I really notice it helps
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Mika Perceived
@perceived.bsky.social
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🥲
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Mika Perceived
@perceived.bsky.social
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I was not surprised. Having to advocate for my health made communication essential. I had to catch up after years of avoidance. Point is our verbal skills might have been better had it somehow felt safe to practice.
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Mika Perceived
@perceived.bsky.social
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I did give up and hide! (I imagine most of us did to a greater or lesser degree). This ties in: I became disabled six years ago and started seeing lots of doctors. I had two neurocognitive evals, two years apart. The psychologist was surprised-- my verbal reasoning score improved!
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Mika Perceived
@perceived.bsky.social
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This is probably at the root of why I avoided science in school, despite high testing across the board. I was terrified of the competition and social posturing, the contemptuous attitudes towards the "dumb questions" I had learned not to ask (re: abstract concepts w/out diagrams).
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Mika Perceived
@perceived.bsky.social
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I remember that too, though I never thought of it like that; what a poignant description.
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Mika Perceived
@perceived.bsky.social
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Thank you, Manu! I've been too foggy brained to post, but getting lots of DIY projects finished 😁
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Mika Perceived
@perceived.bsky.social
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So obvious 🙁 And using photos taken by patients... If not for the ruler, the lighting and image quality might have been the thing.
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Mika Perceived
@perceived.bsky.social
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But I also know that my ability to communicate is eroding. And so I feel a pressure that if something is there, I have to find it before I can't.
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Mika Perceived
@perceived.bsky.social
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I know that scanning and researching in small doses is far better for well-being. I need time to consider new information, process, let sparks fizzle and observational sediment settle into something concrete.
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Mika Perceived
@perceived.bsky.social
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It's been established after all that I have a chronic progressive neurological condition. But I can't accept it. I know every time I look I will feel false eureka sparks. That excitation is part of ADHD (or other frontal subcortical impairment) compensation for being poorly stimulated by externals.
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Mika Perceived
@perceived.bsky.social
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But I've done a bad job managing my time today. I keep going back and comparing other parts, and it's so hard to focus. I have a handful of findings that I keep telling myself I will organize into a cohesive presentation. I might not have that capacity in my current condition.
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Mika Perceived
@perceived.bsky.social
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Last night I was pretty sure I had something new in an old MRI, and I woke up eager to cross-reference my other imaging studies. Doing so led me to conclude that I didn't find anything after all, upon which I got distracted and did this.
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Mika Perceived
@perceived.bsky.social
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I found the Cysticercosis ELISA test locally, but not the preferred/ mire accurate EITB. I will get the test. I also want to organize a selection of images from the papers I've read and present them alongside my own, though it would be a feat of executive functioning in my current state.
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Mika Perceived
@perceived.bsky.social
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Also awaiting copies of McMinn's Color Atlas of Head and Neck Anatomy, and Illustrated Anatomy of the Head and Neck by Margaret J. Fehrenbach and Susan W. Herring.
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Mika Perceived
@perceived.bsky.social
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I ordered a book! With pictures!!!
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Mika Perceived
@perceived.bsky.social
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It's disappointing behavior
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Mika Perceived
@perceived.bsky.social
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I was under the impression they were already doing that?
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Mika Perceived
@perceived.bsky.social
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And I'm sorry, I'm sure there was a simpler way to say that, but it escaped me 😅
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Mika Perceived
@perceived.bsky.social
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Right, arguing with nonsense is an exercise in diminishing returns! I don't suggest trying to convince people to think a certain thing, but teaching a skill so that whatever conclusions we arrive at, there is a commonality of logic (resulting in decisions that better serve each individual).
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Mika Perceived
@perceived.bsky.social
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Let's explore Somethings. I like seeing efforts at public education re: critical thinking, or... What if there was a way to minimize the social performative value of having/sharing an opinion? Like.. if it were "cool" to be circumspect, and discuss vs debate. Strategic social manipulation?
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Mika Perceived
@perceived.bsky.social
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EITB for NC has almost 98% sensitivity when >=2 live parasites! This drops to 50-60% in cases with only one cyst; also low if they're calcified. *DOI 10.1016/j.idc.2018.10.007 Christina M. Coyle, Neurocysticercosis: An Individualized Approach
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Mika Perceived
@perceived.bsky.social
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I love my doctor and am so sad that he will be moving out of state. He's always made me feel heard. He agreed to write a letter recommending me to the Undiagnosed Diseases Network, AND he's willing to order the Cysticercosis EITB test! (I just have to find a lab here that does it).
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Mika Perceived
@perceived.bsky.social
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Request the required reference write-up?
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Mika Perceived
@perceived.bsky.social
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Hehe, request the required reference
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Mika Perceived
@perceived.bsky.social
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NIH called back. Referred me to the Undiagnosed Diseases Network undiagnosed.hms.harvard.edu
I'll see my doctor tomorrow and ask for the required letter of reference so I can apply. Write up the main points for him tonight to make it easier.
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Mika Perceived
@perceived.bsky.social
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My quest continues. I've attempted to contact three Neurocysticercosis experts. One is retired. One referred me to another, whom I tried by email and phone (and want to have imaging sent to, but must request in person/ don't drive). Emailed an NIH study group today.
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Mika Perceived
@perceived.bsky.social
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Honestly, it's still weird to think of myself as disabled. Does that change?
perceiveddistinctions.blogspot.com/2024/06/abil...
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Mika Perceived
@perceived.bsky.social
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But that is adorable!
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Mika Perceived
@perceived.bsky.social
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There will always be people who misidentify out of a need for belonging– in any category. That doesn’t mean there are no categories. And Pryal makes an excellent point re: unmasking.
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Mika Perceived
@perceived.bsky.social
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Reading just that article, it sounds like Singh is repeating the tired argument that mental health diagnoses rely on the Barnum effect. Perennial response: DSM criteria are intended and revised to be precise enough to apply consistently to *specific* cohorts.
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Mika Perceived
@perceived.bsky.social
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Worth considering by all figures of authority!
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Mika Perceived
@perceived.bsky.social
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I learned that I will make a fuss With or without witness. Which is worse?
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Mika Perceived
@perceived.bsky.social
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That has got to be the inspiration
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