Can we just recirculate this EPIC article from a group at @ubuffalo (same place they developed both the Early #Sjogrens antibody panel and the #FcRN inhibitor that became #Vyvgart), on metabolic disease and “seronegative” Sjogren’s? It is a MUST READ. pmc.ncbi.nlm.nih.gov/articles/PMC12…
Comorbid metabolic disease and (SS-A negative but Early Sjogren’s Ab positive!) Sjogren’s = all the severe symptoms “seronegative” (but not really) Neuro Sjogren’s patients are having! Including the severe ME/PEM like metabolic issues, fatigue, crashes!
Diagnosing and and treating the comorbid metabolic disease in Sjogren’s patients helps their symptoms!
This fully encompasses all the worst #NeuroSjogrens and SSA negative patients’ severe symptoms!
Patients were almost all positive for the “Early Sjogren’s” antibody panel but SSA negative!
![All of the patients had autoantibodies associated with Sjogren's disease, but only a few patients had SSA antibodies, which are the only autoantibodies in the official America-European diagnostic criteria for Sjogren's disease [76]. Nonetheless, these patients all met the necessary clinical criteria and demonstrated autoreactivity through the presence of autoantibodies directed towards salivary and lacrimal gland antigens; the diagnostic criteria may have to be expanded to include additional autoantibodies. Furthermore, the expression of SSA versus SP1/CA6/ PSP may denote different stages o...](https://pbs.twimg.com/media/G0HJUjebYAASCte.jpg)
They even talk about overlap with not just mitochondrial but glycogen storage diseases! This matters to me personally because I’m a Pompe gene carrier, with confirmed reduced Alpha-Glucosidase.
On top of having had the positive early antibodies both in 2016 and 2024. And SSA positive on Mitogen’s Sjogren’s panel in 2021 (prior to Rituximab). And positive Schirmer’s and tear film testing. And positive QSART, immunodeficiency, and MCAS.
It is absolutely beyond incomprehensible that I am being refused all medical care in Vancouver just because my care was mismanaged and I nearly died. I have a VALIDATED LEGITIMATE ILLNESS and multiple serious complications like persistent untreated GI infections and osteoporosis.
Why am I being stonewalled from accessing medical care for this well documented very real disease?! I can advocate until I’m literally blue in the face and dying, but it is getting me nowhere because the local doctors have closed ranks and blocked me from accessing medical care.
Please anyone who can, help me. Spread the word about this disease - there are so many more just like me in BC, across Canada, and around the world being gaslit and left to die from this serous illness. #Care4ComplexBC #Care4ComplexCanada #Care4Complex #CdnHealth #BCPoli #MAID #Sjogrens #NeuroSjogrens #MetabolicDisease
@SarahSchaferMD @NeuroSjogrens @NeurologistMom @dysclinic (I think these authors may be colleagues of yours?) @PutrinoLab @bexiphd @elisa_comer @jenn_smo @agutheragu @ArthrDietitian
ps. This article doesn’t even get into the Autoimmune SFN and severe #Dysautonomia Sjogren’s is causing, when you add that it gives the full picture of why this patient population is so severely ill, how to break down their complexity, and most importantly TREAT US.
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