Neuro Sjogrens @NeuroSjogrens
Neuro damage is prominent in Sjogrens. NeuroSjogrens/Sjogrens/chronic illness info posted. Advocacy, not med advice. RT's appreciated, helps spread the word! Joined September 2022-
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"The Role of Heparin in Postural Orthostatic Tachycardia Syndrome and Other Post-Acute Sequelae of COVID-19" Heparin-> anticoag, immunomod, antiviral, endothelial, & vascular resistance properties. (These r imp in Sjogrens too.) No ongoing trials atm. ncbi.nlm.nih.gov/pmc/articles/P…
🧵🧵 Recently - Chart note: Reason for visit: To discuss Rx cost. REAL reason for visit: Foot pain, curving toes in setting of RA/Sjogrens. Here to discuss foot orthotics, PT, other tx options. 👉 DEAR PHYSICIANS: GET IT RIGHT. THIS ISN'T HARD. Thanks, Patients everywhere
I've been dealing with Sjogrens since 2014, and now it's 2024. I added up all the costs I've had over the past 10 years, and it's around 300,000 euros – that's like buying a small house. Being sick with a chronic and often overlooked autoimmune disease is expensive. And that's…
Surveys of people diagnosed with Sjogrens in middle age find about 1/2 identify symptoms starting in childhood or early adulthood. Sjögrens is not a disease of middle age, it just takes decades to diagnose. We need better tests and treatment.
Surveys of people diagnosed with Sjogrens in middle age find about 1/2 identify symptoms starting in childhood or early adulthood. Sjögrens is not a disease of middle age, it just takes decades to diagnose. We need better tests and treatment.
Story re cats at dairy farm catching virus from cows (in best estim.) Cats got neuro symptoms. Some went blind & died Is it plausible "avian" flu could cause enough loss of milk in all cows such that the next generations of cows might get enough? arstechnica.com/science/2024/0…
Sarah Schafer MD MPH @SarahSchaferMD
3K Followers 2K Following Medical educator, Sjogren’s & spondylitis patient. I combat Sjogren's myths to improve diagnosis and care for this serious, systemic disease. No medical advice.
S Blitshteyn MD, FAAN.. @dysclinic
20K Followers 1K Following Neurologist, Director of #Dysautonomia Clinic, Clinical Associate Professor @Jacobs_Med_UB. Trained @MayoClinic #LongCovid #POTS #EDS, tweets🚫med advice
Dysautonomia Intl. @Dysautonomia
26K Followers 344 Following Dysautonomia International is a 501(c)(3) non-profit that raises funds for research and promotes awareness of disorders of the autonomic nervous system.
Dr Claire Taylor @drclairetaylor
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Sandhya Pulukool MD @SandhyaRheumat
776 Followers 313 Following Rheumatologist at St.Stephen’s Hospital,Delhi | Passionate about Sjögren’s Syndrome | Calicut - JIPMER - CMC Vellore | Co-convenor APLAR & IRA #Sjogrens SIG
Abraham @AbrahamAubry
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LongCovidPharmD @organichemusic
37K Followers 1K Following Doctor of Pharmacy. Long Covid, EBV & ME/CFS research. Here to share & learn. Tweets not medical advice. https://t.co/jqc4g8cFLa https://t.co/lKQezPwtQs
Autoimmune List @AutoimmuneList
9K Followers 4K Following #Autoimmune diseases: information and worldwide medical news updates. https://t.co/zp6PHneZxj
Candace D. @DiaryofaSickGrl
12K Followers 1K Following Wife. Mother. Dog mom. Chronic illness advocate. 🥄♥️ #hEDS, #MCAS, #POTS, #foodallergies, #cornallergy, etc.
Bea is Chronically Pe.. @Be_Kinderr
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Susan Masterson, Ph.D.. @DoctorStrive
825 Followers 453 Following Because it isn't in your head. #Sjogren's patient & psychologist empowering others with a body they didn't expect to have. #autoimmune #chronicillness #spoonie
IleneRuhoyMDPhD @RuhoyMD
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Amanda Hinkle, MD, FA.. @AHinkle628
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Pam Bishop, PhD @pamelarbishop
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David Christopher �.. @MLS_Dave
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Tess Falor, Ph.D. | @.. @tessfalor
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ME/CFS News @MECFSNews
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Mr Tibbs🌈 Meet Lad.. @MrTibbsMeow
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jellyrollblues #Covid.. @jlerollblues
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ScienceJournalB @ScienceJournalB
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UMC Utrecht @UMCUtrecht
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S Blitshteyn MD, FAAN.. @dysclinic
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jellyrollblues #Covid.. @jlerollblues
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Ocular Immunology Res.. @OcularOirg
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UMC Utrecht @UMCUtrecht
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UMC Utrecht Internati.. @UMCU_Intl
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12 Followers 70 Following 😷🍉New to Twitter not new to Long Covid/Finally embracing I was never destined to be Jo/All views are my own
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Ariane~I NEED A GI DO.. @arianek
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BlkNtvTerraFFVI @BlkNtvTerraFFVI
566 Followers 939 Following I love being Indigenous and Black what can I say it's good af man BMore/Separated Chickahominy on Bsky and Threads at same username RIP Dad -3/27/2024@NeuroSjogrens @SarahSchaferMD This is super interesting, my toes/feet are very affected, and I’ve been wondering why I’m having bladder issues. :/
🧵🧵 Recently - Chart note: Reason for visit: To discuss Rx cost. REAL reason for visit: Foot pain, curving toes in setting of RA/Sjogrens. Here to discuss foot orthotics, PT, other tx options. 👉 DEAR PHYSICIANS: GET IT RIGHT. THIS ISN'T HARD. Thanks, Patients everywhere
I've been dealing with Sjogrens since 2014, and now it's 2024. I added up all the costs I've had over the past 10 years, and it's around 300,000 euros – that's like buying a small house. Being sick with a chronic and often overlooked autoimmune disease is expensive. And that's…
Surveys of people diagnosed with Sjogrens in middle age find about 1/2 identify symptoms starting in childhood or early adulthood. Sjögrens is not a disease of middle age, it just takes decades to diagnose. We need better tests and treatment.
Although pediatric #Sjogren Disease, or diagnosis of SD before the age of 18 years, was previously considered quite rare, cases are increasingly reported. ~ Unique Aspects of Pediatric Sjögren Disease #SjogrensAwarenessMonth ncbi.nlm.nih.gov/pmc/articles/P…
@NeuroSjogrens @dysclinic We need these autoantibody tests to be widely commercially available!!
@NeuroSjogrens It sure feels like it. 🥵
@arianek @NeuroSjogrens Sorry to hear you are dealing with this. I haven't experienced anything that severe. So all I can offer is being heard by someone and pictures of cats to, hopefully, give you something to smile about while you rest.
@NeuroSjogrens 500 x day. Standard dose. I found one article that supports Metformin in this and PCP was gracious enough to allow me to try it. Good Luck.
@NeuroSjogrens And it has improved a ton while I was on IVIG but has apparently returned.
@NeuroSjogrens Absolutely - I’ve been on potassium supplement for years, and used to have standing blood checks for it, but my GP cut me off of those. 🙃 But that said, this doesn’t feel like from potassium because it’s triggered by exertion and passes with just time.
@phi_psd I’ve had LC since an infection four years ago. I’m now mostly recovered (occasional fatigue, chest pain and body aches) and am only triggered by over exertion. I even had a baby at the end of last year! Just wanted to reply so you know some people do recover or mostly recover! 😊
Long Covid day 465. I just left my doctor’s office, and she doesn’t think I’ll ever recover. She only has one Long Covid patient who has 100% recovered. So yeah, I guess that was my life, done at 32, lol—so much for those super mild variants. Thanks for nothing, public health.
@NeuroSjogrens I have to take the lowest dose as I lack the ability to efficiently break it down. Side effects are that my weakness improved. (did not go away) I added Metformin on a chance last summer. My activity level improved. Wondering how many more meds I will need to tame this.
COVID booster linked to 25% lower odds of long COVID People who received the COVID-19 booster vaccine had 25% lower odds of having long COVID than their unvaccinated counterparts. cidrap.umn.edu/covid-19/covid…
My best friend said I was a hypochondriac. She goes to doctors and they repair and fix things. Later, she gets better. This never happens, for us.
#Sjogrens #NeuroSjogrens I don't enjoy pointing this out. I do so because this is what I hear from ppl living w Sjogrens. It's also been my experience that 98% of what I've learned has been not been from my clinicians. Given my background, it was quite a rude awakening. ⬇️⬇️⬇️
"Vote Democratic. We don't shoot puppies."
PMC COVID-19 Forecast, April 29, 2024 (U.S.) Transmission continues to decline. About 1 in 161 people in the U.S. are infectious, the lowest levels since July 1. Transmission levels are higher than during 27% of the pandemic, but a good time to catch up on delayed care. 1/4
@NeuroSjogrens @SarahSchaferMD The naturopath that I’m doing this with is also a researcher, so I’m super curious.
@chydorina This didn’t happen over hours, but extreme mold avoidance brought on a lasting remission for me, and it started in a sudden way — it wasn’t a slow, gradual improvement. And yes, I was pretty euphoric.
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