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.

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...

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...

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

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...

👏👏👏 @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." ⬇️

Gorgeous pics!

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?

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.

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

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/

🚨👀 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

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

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?

🚨‼️👀 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...

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

This is actually very exciting for patients with sjogrens

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….

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.

Is it sunburn? Is it Sjogrens flaring? Is it a spotty plague spread by inconsiderate fuckers? Who knows?

you know, colchicine is a terrible drug but wow does it come in clutch when my sjogrens causes ~problems

Anyone know rules for your acct handle? I have an alert sign saying my handle is invalid. 🤷‍♀️

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.)

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)

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.

👏👏👏 Sjogrens Disease Peripheral Neuro Clinical Practice Guidelines are a poster board presentation @ACR2024!

I am mobilizing + giving free weekly science communication workshops in a private community for scientists + media who want to join the battle vs misinformation. I wasn't planning on doing this so soon but this is urgent. ALL scientists "hard" + "soft" DM with your credentials for details.

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...

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+. 🧵

#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. ...

📌

📌

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

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?

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.

Meibomian gland (eyelid) dysfunction is common in Sjogrens.

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...

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

Important reminder:

#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!

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...

🚨🤯 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.

🤔 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...

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...

Hello Bluesky!

Sjogrens is a leading cause of dysautonomia. Invisible dynamic disability is often poorly recognized by medical practioners & family. twitter.com/Dysautonomia...