The 6 months of cyclophosphamide helped to a degree, and now I am on collcept, another immunosuppressant and it makes me so sick and more depressed than ever. I also have # myasthenia gravis so that kinda sucks and my cystic lung disease is bad
#NeuroSjögrens #myastheniagravis #cysticlungdisease
#NeuroSjögrens #myastheniagravis #cysticlungdisease
July 15, 2025 at 11:36 AM
The 6 months of cyclophosphamide helped to a degree, and now I am on collcept, another immunosuppressant and it makes me so sick and more depressed than ever. I also have # myasthenia gravis so that kinda sucks and my cystic lung disease is bad
#NeuroSjögrens #myastheniagravis #cysticlungdisease
#NeuroSjögrens #myastheniagravis #cysticlungdisease
The result of medical neglect. #myalgicenchephalomyelitis #neurosjogrens #väsymysoireyhtymä #medicalabuse
May 27, 2025 at 9:08 AM
The result of medical neglect. #myalgicenchephalomyelitis #neurosjogrens #väsymysoireyhtymä #medicalabuse
If I had MS or Myasthenia Gravis, I could access other treatment options. But since my disease is under researched, under diagnosed, and under treated, I was badly medically injured and neglected, and am now being condemned to an early death. #NeuroSjogrens #Dysautonomia #Care4ComplexCanada
February 27, 2025 at 8:05 PM
If I had MS or Myasthenia Gravis, I could access other treatment options. But since my disease is under researched, under diagnosed, and under treated, I was badly medically injured and neglected, and am now being condemned to an early death. #NeuroSjogrens #Dysautonomia #Care4ComplexCanada
I just wrote a huge thread on my overall medical situation, #NeuroSjogrens vs #IgG4RD, and WTF to do now, over in the bad place, here’s the ThreadReader of it: threadreaderapp.com/thread/18908...
Thread by @arianek on Thread Reader App
@arianek: Ok autoimmune #NeuroSjogrens + Rheumatoid nerds - I’ve been reading again about #Sjogrens vs. #IgG4RD. My IgG4 has been persistently elevated for over a decade, rises w/flares. Highest was 3...
threadreaderapp.com
February 15, 2025 at 8:16 PM
I just wrote a huge thread on my overall medical situation, #NeuroSjogrens vs #IgG4RD, and WTF to do now, over in the bad place, here’s the ThreadReader of it: threadreaderapp.com/thread/18908...
She has to live a serene life. Her life actually depends on it. Stress triggers autoimmune flares.
#chronicallyill #autoimmume
#Lupus #NeuroSjogrens
#chronicallyill #autoimmume
#Lupus #NeuroSjogrens
January 29, 2025 at 2:56 PM
She has to live a serene life. Her life actually depends on it. Stress triggers autoimmune flares.
#chronicallyill #autoimmume
#Lupus #NeuroSjogrens
#chronicallyill #autoimmume
#Lupus #NeuroSjogrens
I’ve been off treatment for 13 months now. I’m relapsing badly (even though the local neurologist refused to acknowledge it + dumped me back to rheumatology who previously refused me care). How long till my swallowing fails? This is the worst game of chicken ever. #NeuroSjogrens
January 27, 2025 at 7:11 PM
I’ve been off treatment for 13 months now. I’m relapsing badly (even though the local neurologist refused to acknowledge it + dumped me back to rheumatology who previously refused me care). How long till my swallowing fails? This is the worst game of chicken ever. #NeuroSjogrens
This seems exciting but it doesn’t help complex patients. Doctors act like I’m such a freak, as if I have a rare disease - but #NeuroSjogrens and Autoimmune Neuropathy aren’t rare diseases at all, so there’s no way for me to get newer treatments that are only available in the US. #Care4ComplexCanada
Government of Canada signs bilateral agreement with Ontario for Drugs for Rare Diseases www.canada.ca/en/health-ca... @markhollandlib.bsky.social
Get weekly updates: CanadaHealthwatch.ca/newsletter 🍁
Get weekly updates: CanadaHealthwatch.ca/newsletter 🍁
January 24, 2025 at 5:09 PM
This seems exciting but it doesn’t help complex patients. Doctors act like I’m such a freak, as if I have a rare disease - but #NeuroSjogrens and Autoimmune Neuropathy aren’t rare diseases at all, so there’s no way for me to get newer treatments that are only available in the US. #Care4ComplexCanada
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...
www.nature.com/articles/s41...
January 23, 2025 at 1:00 PM
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...
www.nature.com/articles/s41...
Lest you think I’m the only patient being put through absolute hell in this province, please watch this horrific story from a fellow #NeuroSjogrens - #Dysautonomia patient who has severe gastroparesis: www.instagram.com/reel/DE6XQ3L...
#Care4ComplexCanada #Care4ComplexBC
#Care4ComplexCanada #Care4ComplexBC
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https://instagram.com/reel/DE6XQ3LxT…
January 17, 2025 at 5:11 AM
Lest you think I’m the only patient being put through absolute hell in this province, please watch this horrific story from a fellow #NeuroSjogrens - #Dysautonomia patient who has severe gastroparesis: www.instagram.com/reel/DE6XQ3L...
#Care4ComplexCanada #Care4ComplexBC
#Care4ComplexCanada #Care4ComplexBC
#NeuroSjogrens #Dysautonomia
#Care4Complex ....
Gestern bin ich "gestolpert".
Ich sah einen Post einer Expertin, die einen "Account" auf einen Fehler aufmerksam machte.
Nein, man hat sich nicht über die Klarstellung gefreut 😭
Jetzt wurde ich blockiert.
Mein Hinweis
"okay, vielleicht weißt
#Care4Complex ....
Gestern bin ich "gestolpert".
Ich sah einen Post einer Expertin, die einen "Account" auf einen Fehler aufmerksam machte.
Nein, man hat sich nicht über die Klarstellung gefreut 😭
Jetzt wurde ich blockiert.
Mein Hinweis
"okay, vielleicht weißt
January 9, 2025 at 9:55 PM
#NeuroSjogrens #Dysautonomia
#Care4Complex ....
Gestern bin ich "gestolpert".
Ich sah einen Post einer Expertin, die einen "Account" auf einen Fehler aufmerksam machte.
Nein, man hat sich nicht über die Klarstellung gefreut 😭
Jetzt wurde ich blockiert.
Mein Hinweis
"okay, vielleicht weißt
#Care4Complex ....
Gestern bin ich "gestolpert".
Ich sah einen Post einer Expertin, die einen "Account" auf einen Fehler aufmerksam machte.
Nein, man hat sich nicht über die Klarstellung gefreut 😭
Jetzt wurde ich blockiert.
Mein Hinweis
"okay, vielleicht weißt
January 3, 2025 at 12:26 AM
I typically say “complex illness” because it’s more of a constellation of conditions that often come together. Severe #NeuroSjogrens (Sjogren’s with neurological complications - autoimmune small fibre neuropathy and CNS involvement, severe #Dysautonomia #POTS and GI dysmotility, mast cell disease…
January 1, 2025 at 9:43 PM
I typically say “complex illness” because it’s more of a constellation of conditions that often come together. Severe #NeuroSjogrens (Sjogren’s with neurological complications - autoimmune small fibre neuropathy and CNS involvement, severe #Dysautonomia #POTS and GI dysmotility, mast cell disease…
Please research #NeuroSjogrens, EBV/Lyme/Covid/other entero + coronaviruses! Sjogren’s is the top cause of autoimmune Dysautonomia and POTS, and Covid is triggering it. EBV also sets off MS which Neuro Sjogren’s can be mistaken for. Sjogren’s + MS have same HLA genes. Not coincidences! #Care4Complex
the paradigm is shifting and what a time to be alive.
treating these persistent infections and modulating host immune responses.
imagine applying this to every known pathogen linked to devastating illnesses.
will we rise to the challenge and discover effective treatments?
treating these persistent infections and modulating host immune responses.
imagine applying this to every known pathogen linked to devastating illnesses.
will we rise to the challenge and discover effective treatments?
December 29, 2024 at 7:24 PM
Please research #NeuroSjogrens, EBV/Lyme/Covid/other entero + coronaviruses! Sjogren’s is the top cause of autoimmune Dysautonomia and POTS, and Covid is triggering it. EBV also sets off MS which Neuro Sjogren’s can be mistaken for. Sjogren’s + MS have same HLA genes. Not coincidences! #Care4Complex
And please spread the word to your friends, and share this post far and wide! Thanks everyone, hope to see you in the group. ✊💕 #Dysautonomia #MCAS #POTS #EDS #NeuroSjogrens #LongCovid #MECFS #Care4ComplexCanada #Care4ComplexBC #Care4Complex
December 13, 2024 at 9:23 PM
And please spread the word to your friends, and share this post far and wide! Thanks everyone, hope to see you in the group. ✊💕 #Dysautonomia #MCAS #POTS #EDS #NeuroSjogrens #LongCovid #MECFS #Care4ComplexCanada #Care4ComplexBC #Care4Complex
There is a constant stream of patients online whose “idiopathic” neuropathy, burning mouth syndrome, pain, fatigue, gastroparesis, #POTS, #MCAS, etc. turn out to be from #NeuroSjogrens after years of desperate self advocacy. So why are the doctors not catching up? #Care4Complex
December 6, 2024 at 11:36 PM
There is a constant stream of patients online whose “idiopathic” neuropathy, burning mouth syndrome, pain, fatigue, gastroparesis, #POTS, #MCAS, etc. turn out to be from #NeuroSjogrens after years of desperate self advocacy. So why are the doctors not catching up? #Care4Complex
If you are a post viral patient and have: burning skin (esp. feet), POTS, Gastroparesis, swallowing problems, diarrhea or difficulty pooping (or both), MCAS, hives, severe fatigue, PEM, tinnitus, voice weakness, blood pooling, livedo reticularis, altered bladder sensation… GET TESTED FOR SFN.
December 2, 2024 at 7:08 PM
Complex illness folks you may be interested in this too. #Care4Complex #NeuroSjogrens
Quite a few speakers from the conference have similar talks online. I can send you some (or better yet post them for everyone). FASI (foodallergyscience.org) has a number available on their site.
Food Allergy Science Initiative (FASI) | The Future of Medicine
FASI is the only global entity dedicated to food allergy discoveries through a collective of academia, industry, philanthropists, & parents.
foodallergyscience.org
December 2, 2024 at 5:50 AM
Complex illness folks you may be interested in this too. #Care4Complex #NeuroSjogrens
Also, there are SO MANY OF US. Thousands if not millions of people disabled by this illness, suffering, unable to work or live their lives. There is such a huge opportunity to help (and a big business opportunity that is currently untapped). #NeuroSjogrens
I really don’t understand the neglect of #NeuroSjogrens patients by the medical system (especially outside the US). We are so severely ill. Autonomic failure. Severe MCAS. Severe neuropathy and neuropathic pain. Severe weakness, fatigue, and PEM. And virtually completely medically abandoned.
December 1, 2024 at 9:02 PM
Also, there are SO MANY OF US. Thousands if not millions of people disabled by this illness, suffering, unable to work or live their lives. There is such a huge opportunity to help (and a big business opportunity that is currently untapped). #NeuroSjogrens
If there’s no cure yet, give your love and compassion wholeheartedly to those around you who are suffering. It won’t cure them, but it can make a huge difference in how they feel. This is the only thing I can do for my daughter right now 🥺 #LongCovidTeens
December 1, 2024 at 8:50 PM
Cc/ team #NeuroSjogrens - @neurosjogrens.bsky.social @sarahschafermd.bsky.social @jennsmo.bsky.social @arthritisdietitian.bsky.social @neurologistmom.bsky.social I’m sure I’m forgetting people please feel free to tag them!
December 1, 2024 at 8:47 PM
Cc/ team #NeuroSjogrens - @neurosjogrens.bsky.social @sarahschafermd.bsky.social @jennsmo.bsky.social @arthritisdietitian.bsky.social @neurologistmom.bsky.social I’m sure I’m forgetting people please feel free to tag them!
People are not being diagnosed due to being SS-A negative (even more common in severe #NeuroSjogrens), early Sjogren’s antibodies are not tested or valued outside US even tho they are more common in autoimmune dysautonomia. And worst of all the specialists do not want to know or learn.
December 1, 2024 at 8:44 PM
People are not being diagnosed due to being SS-A negative (even more common in severe #NeuroSjogrens), early Sjogren’s antibodies are not tested or valued outside US even tho they are more common in autoimmune dysautonomia. And worst of all the specialists do not want to know or learn.
I really don’t understand the neglect of #NeuroSjogrens patients by the medical system (especially outside the US). We are so severely ill. Autonomic failure. Severe MCAS. Severe neuropathy and neuropathic pain. Severe weakness, fatigue, and PEM. And virtually completely medically abandoned.
December 1, 2024 at 8:44 PM
I really don’t understand the neglect of #NeuroSjogrens patients by the medical system (especially outside the US). We are so severely ill. Autonomic failure. Severe MCAS. Severe neuropathy and neuropathic pain. Severe weakness, fatigue, and PEM. And virtually completely medically abandoned.
The researchers were extremely cautious with sharing any additional info related to #nipocalimub in #sjogrens to a patient. It's fair because we need to stay unbiased till we have more data #ACR24 Love the interest from rheumatologists
November 22, 2024 at 9:05 PM
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
@OMERACT
November 18, 2024 at 6:25 AM
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
@OMERACT
published so clinicians can help this terribly underserved population. Can immune checkpoint inhibitor adverse related neurologic damage hold any clues for NeuroSjogrens patients?
November 12, 2024 at 1:02 PM
published so clinicians can help this terribly underserved population. Can immune checkpoint inhibitor adverse related neurologic damage hold any clues for NeuroSjogrens patients?