This is a Tweet for everyone missing @Arley_McNeney, who maybe feels very alone in that missing because social media grief is weird and odd in its transience but I really miss her today and I know many of you do too. <3
🚨 My new paper on small fiber #neuropathy in NONPAINFUL conditions is published. Neuropathy is traditionally defined by neuropathic (tingling, numbness, burning, shooting) pain, but there are neurologic and non-neurologic conditions where objective findings of small fiber neuropathy are highly prevalent despite the pain being absent or minimal. I outline comprehensive treatment options for small fiber neuropathy with both evidence-based and emerging therapies in the Table. 🧠
https://t.co/YBTEFiTWyl
Israeli occupation forces have been using this “foul odorant,” known as skunk liquid, since 2008 against Palestinian crowds, homes, shops, schools, hospitals, hotels, restaurants, neighbourhoods, and even funeral processions.
I don't have a PhD in scent and its literary/social/cultural meanings (that's Dr. Louks' field) but I wonder what the smell of "dude feigns ignorance about norms in his own field, publishing, to try and pwn a woman with more current relevance as a public intellectual than him" is
Why is Vintage publishing her book with “Dr” in the byline? Because the book’s marketing is tied to her being an internet main character of the day so her name on the cover has to allude to this? Weird things are happening in publishing.
🏆 Here is a beautiful study of 17 patients who presented to the ER with abnormal movements and other neurologic problems and were misdiagnosed with #FND. It turned out that... all 17 patients had #dysautonomia and most improved with dysautonomia-targeted treatment!
🎉 The authors conclude that patients presenting with abnormal movements should be evaluate for dysautonomia and not be mislabeled with FND.
P.S. I was not involved in this study or its publication, I promise, but my experience directly parallels that of the authors'. 😂
https://t.co/sR0jhBUD38
@arianek Yup - I no longer have cold beverages because of it. I drink room temp because if I haven't had enough K+, even during the summer, cold water can cause localized weakness that causes swallowing issues. No being in direct line of A/C or fan, etc.
Very interesting that when I tell my doctors that I have had a MASSIVE increase in function by doubling the amount of potassium I was supplementing (from not really going for walks and having severe DOMS with exercise to now being on Week 6 of a 100km cycling training plan...)
rest in peace sam, i’m so sorry your care couldn’t be better to help you. you and your advocacy will never be forgotten. thank you for all that you’ve done for the community. i really hope things are kinder on the other side ❤️🩹🕊️ #millionsmissing
@arianek Which is funny because cold is an asthma trigger, but even breathing in cold air sitting out too long at 10 degrees can cause throat and even stomach cramps if I'm low in potassium. Warming up in a car making it go away was the tell for me. Potassium I love uuuu
@arianek Oh no! I had a conversation with my clinical pharmacist about salbutamol as well - Ventolin is used as rescue for hyperKPP, but for hypoKPP it is a very noodling drug for me when it wears off. Any throat/chest tightness/wheezing I have usually is often low K+ affecting muscles...
@arianek (Seems like glucocorticoid-induced hypoKPP is its own thing, but for folks who may already have a primary or secondary hypoKPP, glucocorticoids may add an extra problem. I don't even take steroid inhalers because of this effect - it causes the weakness in my throat/esoph.)
@arianek I had to do research to make sure I wasn't imagining it but systemic steroids can in fact exacerbate hypokalemic and thyrotoxic periodic paralysis (I am on pulse doses of them for autoimmune urticaria now as needed). Added extra potassium chloride to sip and am right as rain!
@IRPlawyer Oh, Kyla, I'm so sorry. I know how much he was your constant companion, your little shadow. I hope you'll get to be so gentle with yourself in the coming days, weeks, months. You loved him so greatly and he loved you so greatly right back. <3
@arianek I don't think you can get the unflavoured "Effer-K" brand up here in Canada, but I've also ordered potassium citrate/bicarbonate powder in the past from Bulk Supplements or other.
@arianek It turns out I'm citrate sensitive but when I first suspected hypoKPP my go-to was the fizzy potassium citrate tablets (K-Lyte is the brand). They broke a lot of rigid and flaccid paralysis episodes fast. They're orange-flavoured.
@arianek Haven't had major paralysis episode in the month since I basically doubled my K+. Everyone was like "ohhhhhh watch yourself" and I'm like yes, I know. But I also am debilitated by the potassium loss. I know healthy folks on keto who take half of what I do, so this isn't THAT odd.
@arianek I take almost 100mEq of elemental K+, which is extremely high, plus extra if doing very strenuous exercise. No heart flutters anymore. I'm on Topamax which dumps K+ so part of it is keeping up with that, but pharmacist says most ppl do NOT need that much unless underlying issue.
And that means actual careful work by genetic counsellors and geneticists for some disease areas, or specialists willing to do the most rigorous differential diagnoses. But uh, do it for your patients first. And then if not, do it for your colleagues.
Nobody wants to be the experienced surgeon, the surgical resident, or the med student on rotation who is like "oh well, fuck, if only we'd known." There are ways of knowing, or knowing "more than likely" (70% of PP patients do not have a currently-identified gene variant).