Discover and read the best of Twitter Threads about #multisystemic

Most recents (6)

#DysConf2020 Neurogastroenterologist @LauraAPace talking about the multidisciplinary #EDS clinic she helped to set up -- time to dx for the geog area was v long, time to being seen by a clinical geneticist for referred pts was THREE to FIVE YEARS.
Wanted to track comorbid disease burden/syndrome burden. Clinical phenotype was often more severe than the diagnostic label suggested (for hEDS, etc). Need a more comprehensive dx for these patients.
The clinic ultimately didn't work bc, when the clinicians from the specialist EDS clinic recommended patients be followed up with formal screening for potential autonomic dysfunction,& passed on the testing/mgt outline to their primary care physicians...
Read 12 tweets
Dear Twitter, Last night I slept from just after midnight to just after 6AM, AND from 07:24-10:24AM. I guess my brain was REALLY keen on 2x90-miN sleep cycles, bc my narcoleptic phone turned itself off & I woke up w/o my alarm!Here’s me better-rested than I’ve been in ages. A fairly close-up shot of m...
Apparently my good night’s sleep has yet to restore my powers of Superior Proofreading, however. 🙄😆
Whew! Washed & dressed, had quick food+drugs, livetweeted HPS seminar on gender in the academic field of finance research (presented by #CordeliaFine), listened to voicemail, folded laundry while waiting for @steve_kambouris to get off a work call...
Read 11 tweets
Pedersen, N., Duricova, D., & Munkholm, P. (2009). Pulmonary Crohn's disease: A rare extra-intestinal manifestation treated with infliximab. Journal of Crohn's & colitis, 3(3), 207–211. doi.org/10.1016/j.croh…
Hayek, A. J., Pfanner, T. P., & White, H. D. (2015). Inflammatory bowel disease of the lung: The role of infliximab?. Respiratory medicine case reports, 15, 85–88. doi.org/10.1016/j.rmcr…
Read 10 tweets
Dear #NEISvoid/twitter, I am VINDICATED (&, uh, still hyper on steroids, FWIW). Awesome Sleep/RespDoc is of the educated &firm opinion (upon reviewing my hospital discharge summary, lung function test results...which the hospital still hadn’t passed on yet as of this morning? 🙄)
...that I have NOT suddenly & completely coincidentally managed to develop asthma for the first time in my life at the tender age of 39 (although he thinks it does sound like a bronchospasm cough, which is literally how I was describing it when it first started happening.
Nor do I seem to have any kind of lung problem, nor a recent past upper/lower resp tract infection). Although apparently he hadn’t received the results of either of the sputum culture tests from the hosp. I’m assuming they were boringly negative or I’d have heard by now, though.)
Read 37 tweets
@KylenH @bennessb Yes, I think so. I don’t have the super-soft/delicate/stretchy skin of EDS classic type,, & although I do get atopic dermatitis it seems to be different to the irritation & peeling skin I get from tape. I also get a particular (&, I think, related) skin reaction to anything that
@KylenH @bennessb rubs, including my otherwise-awesome thumb splints. Alsoalso very prone to skin tags in high-friction areas, fwiw. I don’t seem to have full-on #MCAS on anything, but I do wonder if #MastCellsGoneWild could be implicated somehow,
@KylenH @bennessb esp given my recent experiences of simultaneous #multisystemic #autoimmune #chronicillness affecting GI system (#IBD: #crohns but also #GORD), skin (#PyoG), joints (#AnkSpond/#spondylarthropathy/ seronegative #arthritis) & prob aspects of the respiratory system
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@FandomjunkieZee @bennessb Clinical depression, seronegative arthritis/#spondylarthropathy, food intolerances (although I needed help working out the specifics), #EDS, #POTS, #endometriosis, #ActuallyAutistic, #PyoG. Thankfully in the latter case I only had a STRONG HUNCH for days before dx was confirmed.
@FandomjunkieZee @bennessb @threadreaderapp unroll, danke schön! 😄
Read 3 tweets

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