Neuro Sjogrens

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.

Sjogrens is NOT a 'gland disease.'

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...

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...

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...

Its not available for clinical use yet. Its congener Vyvgart has a similar mevchanism & is available. Sjogrens has never had ANY drug approved specifically for it. Just this fact makes it a first. Calls attn to Sj. This class of drugs is hoped to work for many autoantibody related diseases.

Good to see you here likymol.bsky.social.

I've met an array of people with different autoimmune diseases at the infusion center who do take both Rituxan & IVIG (regularly) if they have an MD who will provide both.

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

Vivgart is a similar class of drug that is already on the market & already being prescribed for "antibody driven" disease.

Sometimes dysautonomia is supported by autoimmune causes & responds to immunosuppression or immunoglobulin therapies.

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...

Frontiers | Postural orthostatic tachycardia syndrome and other common autonomic disorders are not functional neurologic disorders In the past four years of COVID-19 and Long COVID, a renewed interest in POTS and other autonomic disorders brought to light a common misconception that thes...

Ppl w Sjogrens commonly get POTS & other forms of dysautonomia (organ & tissue neuropathies as opposed to neuropathies of skeletal muscle/motor or skin/ sentation)

www.frontiersin.org/journals/neu...

👏👏👏 @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.

if it could be seronegative Sjogrens and get told NO as ANA and ENA is neg. I stop asking after a while."
-Dr. Rebecca Ryan

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

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...

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/

Time for another Sect that recognizes Systemic Damage as part of the Criteria to Diagnose Sjogrens

in Sjogrens. Damage to any Organs outside the Lubricating Glands is considered Heresy to include into The Sjogrens "Religion" of The Glands.

Clinicians get trapped in the doctrine & rites of The Classification Criteria of The Glands.

So why r ultrasounds being given supremacy over other tests that just as readily show damage Sj does, but in major organs?

Imv, Salivary gland Ultrasound is being unnaturally "Boosted" in clinical ratings out of this strange worship of damage to Lubricating Glands

"How do we know the immune system is causing the damage those tests if we can't see immune cells there?" If this is the rationale, then WHY is salivary Ultrasound supplanting lip biopsy? Ultrasound can't show an immune mechanism at play either. It only shows damage that could also Not Be Sjogrens.

Some might say, "But we can't see the immune cells doing the damage in EMG/NCS, skin biopsies, Tilt Table Tests, SSEP's etc like we can in lip biopsies. That's why a tissue sample/lip biopsy is important & was included in the Classification Criteria.

when Fewer "Not necessarily Sjogrens" items are included. Including only SSA, sicca/dryness, & lip biopsy as the 3 pillars of Sj diagnosis leaves a wobbly 3 legged stool.

Why not strengthen the diagnosis by including points for Sjogrens non salivary gland damage too?

IS NOT necessary for a diagnosis of Sjogrens.

3. A lip biopsy consistent w Sjogrens is also found in other conditions (incl covid) and IS NOT necessary for a diagnosis of Sjogrens.

Cobbling together of items Not Necessarily Sjogrens as a means to Diagnose Sjogrens has less statistical

🚨👀
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