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Neuro Sjogrens

@neurosjogrens.bsky.social
440 followers 244 following 132 posts

Advocate for NeuroSjogrens & assorted other chronic illnesses. Posts articles & re-posts items this acct is interested in. Advocacy rather than advice.

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Neuro Sjogrens @neurosjogrens.bsky.social · 10/02/2025
I think I'll have my salivary/tear glands removed so all of my Sjogrens probs will go away & I can return to work and complete all the daily life tasks life requires.
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Neuro Sjogrens @neurosjogrens.bsky.social · 23/01/2025
Is it happenstance that GLP1 agonists are associated w increased NeuroSjogrens GI symptoms like gastroparesis, nausea, vomitting & heartburn? & Non GI symptoms like hypotension, arthralgias & headaches? www.nature.com/articles/s41...
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Neuro Sjogrens @neurosjogrens.bsky.social · 23/01/2025
If this report is validated then Avian flu might be spreading in China. This report suggests quarantine facilities are being built & live poultry has been banned from a couple large cities. www.ntd.com/bird-flu-out...
ntd.com
Bird Flu Outbreak Affecting Humans in China Likely Massively Underreported: Microbiologist
While more reports of bird flu are coming out across the globe, experts say China has been hard hit as well—and likely substantially harder than the Chinese Communist Party is willing to report. To fi...
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Neuro Sjogrens @neurosjogrens.bsky.social · 22/11/2024
Medicine is as much a Culture as it is an acolyte of Science. Humans are attatched to their inculturations. This attatchment creates Dogma (no longer living & breathing the new findings at the edges of Science.) Cultures are slow to change. This causes delays in Progress in the Fields of Medicine
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Neuro Sjogrens @neurosjogrens.bsky.social · 22/11/2024
A prominent acute dysautonomia flare can go untreated out of 1) a belief there is no altering the damage causing the symptoms & 2) No specialty assumes treating responsibility. Cards thinks its Rheum or Neuro. Rheum thinks it Neuro/Cards. Neuro thinks its Rheum/Cards...
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Neuro Sjogrens @neurosjogrens.bsky.social · 20/11/2024
👏👏👏 @dysclinic et al's article clarifying dysautonomia is not FND. "As medical professionals w expertise in autonomic d/os, we wud like 2 emphasize the distinction bt autonomic d/os, autonomic sxs & FND to ensure that approp dx & tx pathways r implemented by clinicians." ⬇️
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Neuro Sjogrens @neurosjogrens.bsky.social · 20/11/2024
Gorgeous pics!
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Neuro Sjogrens @neurosjogrens.bsky.social · 19/11/2024
Sjogrens can be heavy. Distraction can help. If you like things Leonardo da Vinci & things Ken Burns (documentary historian) PBS (in US) will be showing Ken Burns (& dau's) tv documentary of Leonardo da Vinci. Curious to know their interpretation of The Mona Lisa's smile?
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Neuro Sjogrens @neurosjogrens.bsky.social · 19/11/2024
Research classification criteria/CC's are designed to find a "represenative group" of patients to study out of All the patients w that disease & apply those findings to All w the disease. Diagnostic Criteria try to diagnose All w disease. This is why CC's fail as DC's.
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Neuro Sjogrens @neurosjogrens.bsky.social · 19/11/2024
Clinicians in The Know about Sjogrens confront the same reality patients do when they try to get other clinicians to see The Reality of Sjogrens. Its exhausting. "The number of times a POTS lt w other AI disease has dry eyes dry mouth burning neuropathic sounding leg pain & I ask their Rheum
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Neuro Sjogrens @neurosjogrens.bsky.social · 19/11/2024
Paper: "Pleural Irregularities: a new ultrasound marker for lung involvement in primary Sjögren's disease" Pulmonary Ultrasound for Sjogrens. Scrrenshots of abstract to follow in a 🧵 pubmed.ncbi.nlm.nih.gov/39551149/
pubmed.ncbi.nlm.nih.gov
Pleural Irregularities: a new ultrasound marker for lung involvement in primary Sjögren's disease - PubMed
PI may represent a valid tool for the assessment of lung involvement in SjD, particularly for the screening of ILD. PI limited to postero-inferior lung fields seem to maintain good diagnostic accuracy...
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Neuro Sjogrens @neurosjogrens.bsky.social · 19/11/2024
🚨👀 This NEEDS to be said: Why The Definition of Sjogrens matters & tests use to define Sjogrens matters. A 🧵 1. The SSA autoantibody is found in lots of disorders & IS NOT necessary for diagnosis of Sjogrens. 2. Dryness is found in lots of disorders/conditions and
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Neuro Sjogrens @neurosjogrens.bsky.social · 18/11/2024
For NeuroSjogrens to get studied we need actual real diagnostic criteria rather than usung research classification criteria misused as diagnostic criteria. We need to use scales in research that adequately measure Neuro in Sjogrens. We don't even have one of these yet. @OMERACT
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Neuro Sjogrens @neurosjogrens.bsky.social · 18/11/2024
The diagnosis of Sjogrens can be made without sicca/dryness. It can be made without SSA. It can be made without a positive lip biopsy. If we are already cobbling together things that ARE NOT required in Sj to "diagnose" Sj, why not add in systemic disabling things like Neuro?
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Neuro Sjogrens @neurosjogrens.bsky.social · 18/11/2024
🚨‼️👀 Nipocalimab is the first and only investigational therapy granted U.S. FDA Breakthrough Therapy Designation for the treatment of adults living with moderate-to-severe Sjögren's disease. www.prnewswire.com/news-release...
prnewswire.com
Nipocalimab is the first and only investigational therapy granted U.S. FDA Breakthrough Therapy Designation for the treatment of adults living with moderate-to-severe Sjögren's disease
The Breakthrough Therapy Designation (BTD) for investigational nipocalimab in Sjögren's disease, a prevalent autoantibody disease with no approved advanced...
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Neuro Sjogrens @neurosjogrens.bsky.social · 18/11/2024
FDA has given FDA Therapy designation to Nipocalimab 4 treatment of adults w/ mod-to-severe Sjögren’s. NIPO is an Ab to neonatal Fc receptor (FcRn), & was tested & shown effective in Sj Phase 2 DAHLIAS study - a plenary presentation at #ACR24. (@RheumNow post) buff.ly/4fwfnuy buff.ly/4fwfpTc
buff.ly
Nipocalimab is the first and only investigational therapy granted U.S. FDA Breakthrough Therapy Designation for the treatment of adults living with moderate-to-severe Sjögren's disease
The Breakthrough Therapy Designation (BTD) for investigational nipocalimab in Sjögren's disease, a prevalent autoantibody disease with no approved advanced...
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Neuro Sjogrens @neurosjogrens.bsky.social · 17/11/2024
Paper: "Low Dose Interleukin-2 Ameliorates Sjögren's Syndrome in a Murine Model" Has anyone trialed low dose IL2 for their Sjogrens? Abstract to follow. pubmed.ncbi.nlm.nih.gov/35665339/#:~:t….
pubmed.ncbi.nlm.nih.gov
Low Dose Interleukin-2 Ameliorates Sjögren's Syndrome in a Murine Model - PubMed
Sjögren's syndrome (SS) is a systemic autoimmune disease with no efficient treatment, and it is associated with dysregulated immune cells and impaired interleukin (IL)-2 signaling. IL-2 is critical fo...
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Vayl Larkin (they/them) @vayllarkin.bsky.social · 24/12/2023
I hope your preliminary treatment goes well! Just be aware of something I didn't know before now: Seronegative Sjogrens makes your chances of neuropathy go UP. If you're negative on the blood test and the docs try to rule it out, make sure they know/remember that. It would have saved me Years.
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Manos: The Hands of AJ 💀🤚🏻 @uisgebeatha.bsky.social · 13/05/2024
Is it sunburn? Is it Sjogrens flaring? Is it a spotty plague spread by inconsiderate fuckers? Who knows?
media.tenor.com
Dying Hungry And Thirsty GIF
ALT: Dying Hungry And Thirsty GIF
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Baking With Eve (Awkwardly) @evenebula.bsky.social · 21/03/2024
you know, colchicine is a terrible drug but wow does it come in clutch when my sjogrens causes ~problems
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Neuro Sjogrens @neurosjogrens.bsky.social · 14/11/2024
Anyone know rules for your acct handle? I have an alert sign saying my handle is invalid. 🤷‍♀️
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Neuro Sjogrens @neurosjogrens.bsky.social · 12/11/2024
If only we can liberate research articles & make them all free... Per this Post below, Libraries & LibrariansARE Wonderful. Udemy courses for free? Sjogrens often gifts us w ...ahem..."free time"...aka disability. Silver lining seeking here. I have more time to learn (even if less capacity.)
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Neuro Sjogrens @neurosjogrens.bsky.social · 12/11/2024
When "checkpoint inhibitor" drugs are used to rev up the immune system to treat cancer they can cause a "Sjogrens like syndrome" including myopathy (motor weakness/heart/respiratory weakness) & myasthenic like symptoms. Per this abstract 40% get acetylcholine/autonomic Autoantibodies! (Cont)
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RanTLaw @rantlaw.bsky.social · 07/11/2024
Just a quick note to those new here, if you think someone's post is worth other people reading, repost it. Liking it does not have the same effect here as on the dead-bird site. There is no algorithm. That's one of the reasons we like it.
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Neuro Sjogrens @neurosjogrens.bsky.social · 11/11/2024
👏👏👏 Sjogrens Disease Peripheral Neuro Clinical Practice Guidelines are a poster board presentation @ACR2024!
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Neuro Sjogrens @neurosjogrens.bsky.social · 10/11/2024
A NEW MITOCHONDRIA! Rather than make energy/ATP et al, the new type appears (so far) to create basic components for fats & proteins (per short fun video below.) Sjogrens, ME, LC have been shown to have abnormal function in mitochondria. I wonder what else we'll learn now? x.com/Nature/statu...
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Neuro Sjogrens @neurosjogrens.bsky.social · 09/11/2024
These #neurosjogrens papers are paradigm shifting papers imo. (see links @ end of thread) Will b eye opening 4 Neuros 2 read. Note all study subjects must meet current Sj criteria wc obviously ⬆️ %ages who will have sicca+, SSA+ & Bx+. 🧵
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Neuro Sjogrens @neurosjogrens.bsky.social · 09/11/2024
#Dysautonomia damages ur body's automatic pilot (AP) system that controls where blood goes, how food processes/moves, temperature & glucose regulation, BP, HR,sweating etc. W AP damage there is no homeostasis, no "static" issues. Problems shift & change & r unpredictable. ...
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Neuro Sjogrens @neurosjogrens.bsky.social · 09/11/2024
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Neuro Sjogrens @neurosjogrens.bsky.social · 09/11/2024
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David Kronig @davekronig.bsky.social · 08/11/2024
Listen, if you're feeling the urge to build community & look for ways to resist fascism, I need you to start masking in public again. You can't build solidarity with at-risk communities while being actively ableist, and not masking in public is ableist. Sorry to be blunt, but I'm existentially tired
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Neuro Sjogrens @neurosjogrens.bsky.social · 09/11/2024
So, are we moving from the other place to bsky now? Should I post about Sjogrens & NeuroSjogrens here now? Who would like me to post Sjogrens, chronic illness/LC/hEDS info on bluesky platform?
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Covidtoolbox @covidtoolbox.bsky.social · 11/11/2023
Yesterday afternoon, Dr. Amy Proal was @D_Bones' guest on a Twitter Space. She discussed the current landscape of long COVID research from her perspective as the Research Director of the PolyBio Research Foundation. Non-Twitter users can listen from covidtoolbox.com Transcript is also available.
covidtoolbox.com
Covid Toolbox – Resource Hub for COVID/SARS2
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Neuro Sjogrens @neurosjogrens.bsky.social · 08/11/2023
Meibomian gland (eyelid) dysfunction is common in Sjogrens.
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Neuro Sjogrens @neurosjogrens.bsky.social · 04/11/2023
What’s Holding Back Biomarker Innovation, & How Can We Solve It? Research finds biomarkers & panels that could ID autoimmune diseases, PAIS's better & faster than ancient tests currently used. But "The System" resists them. Excellent read ⬇️ by a Rheum. www.the-rheumatologist.org/article/what...
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Neuro Sjogrens @neurosjogrens.bsky.social · 03/11/2023
Sjogrens really is a systemic disease of the nervous system because it can hit pretty much anywhere in the nervous system & often hits several localizations in a patient. The ESSDAI & ESSPRI fail to give adequate weighting to neuro &/or fail to consider all neurosjogrens 1/n
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🇨🇦 Kari Raymer Bishop @kariraymerbishop.bsky.social · 01/11/2023
Important reminder:
Don't forget to set your clocks from sunshine and happiness back to misery and despair this weekend.
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It's ME(Jaime) @exceedhergrasp1.bsky.social · 31/10/2023
#NEISvoid, #disability community! The US Census is changing the definition of severe disability so fewer ppl are identified as disabled! This has far-reaching implications. @valwen.bsky.social shared my advocacy thread using threadreaderapp, complete with action items. Please share widely!
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Eric Topol @erictopol.bsky.social · 31/10/2023
The totality of all data available strongly supports masks to reduce SARS-CoV-2 spread, especially those of high quality. New report jamanetwork.com/journals/jam... New analysis of flawed Cochrane review www.researchsquare.com/article/rs-3...
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Neuro Sjogrens @neurosjogrens.bsky.social · 28/10/2023
🚨🤯 Severe motor neuropathy with limb weakness is often Sjogrens. But its not commonly recognized bc 1) >50% of pts w Sj motor PN are SSA negative 2) Neuro 1st Sjogrens pts frequently lack sicca 3) Sj motor PN r often in Neuro clinics as idiopathic or as CIDP.
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Neuro Sjogrens @neurosjogrens.bsky.social · 19/10/2023
🤔 What could CSF (Cerebro (brain) Spinal Fluid) be doing in the pancreas & liver? This paper discusses how CSF gets transported to the pancreas & liver. www.biorxiv.org/content/10.1...
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Pete Caruso @petecaruso.bsky.social · 13/10/2023
Stem cell therapy has been shown to help people with Sjogren's in a small clinical trial. Analyses of immune activity indicated that ADSC treatment led to a reduction in inflammation markers of IgG, IgM, C3, C4, and ESR (erythrocyte sedimentation rate). sjogrenssyndromenews.com/news/stem-ce...
sjogrenssyndromenews.com
Stem cell therapy can ease Sjögren’s symptoms, small trial finds –...
Injecting the salivary glands with adipose-derived stem cells was shown to ease the symptoms of Sjögren’s in a small clinical trial.
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Neuro Sjogrens @neurosjogrens.bsky.social · 09/10/2023
Hello Bluesky!
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Neuro Sjogrens @neurosjogrens.bsky.social · 09/10/2023
Sjogrens is a leading cause of dysautonomia. Invisible dynamic disability is often poorly recognized by medical practioners & family. twitter.com/Dysautonomia...
twitter.com
Tweet by @Dysautonomia
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