Discover and read the best of Twitter Threads about #Sjogrens

Most recents (15)

@blaubeerblau2 @SjogrensForum Trigeminal small fiber made my face/teeth hurt. 2 yrs no dentist bc nerve pain in all upper teeth from bad nerves. IVIG cleared it up after 9 Mos. Only 1 tooth left w that bad bad pain. Xray showed cracked down thru root. But other non cracked teeth had hurt as bad. 1/n
@blaubeerblau2 @SjogrensForum All the facial/ear symptoms you described could also come from blocked inflamed sinuses & eustachian tube from thickened secretions. But trigeminal small fiber can create the same painful sensations. So ENT can clear you for sinus/eustachian tube issues. 2/n
@blaubeerblau2 @SjogrensForum 3/n How can you ✔️ if it's nerves? Trigeminal nerve has 3 branches. V1 = eyebrows to scalp back to ear level on top. V2=midface/upper teeth (I think re teeth) & V3 is lower face. These are skin distribution levels, but I felt the damage as it progressed backwards thru 3/n
Read 40 tweets
@blakewarner0 @SarahSchaferMD @buckleydebbie Sorry I wasn't clear. - msgb doesn't remove a diagnosis. It closes MD's minds to the possibility of a diagnosis. SSA, mgsb, Schirmers, OSS, measured saliva, salivary ultrasound are ALL nonspecific & not sensitive. This is a bad way to create criteria for a disease. 🧵1/n
@blakewarner0 @SarahSchaferMD @buckleydebbie 2. For most systemic medical diseases diagnosis is made by a constellation of signs & symptoms from all the systems commonly involved, not focusing on one bit (like salivary/lacrimal glands) to the exclusion of all others organs that are classic damage patterns for a disease...
@blakewarner0 @SarahSchaferMD @buckleydebbie 3. Look at lupus criteria. Imagine if one had renal, cardiac & brain damage from lupus but lupus criteria only counted a facial rash, an antibody & a skin bx consistent with lupus. Nothing else counted for lupus. The patient w brain; heart & kidney damage won't b diagnosed...
Read 18 tweets
@mariaj_morenom @AbrahamAubry @SEReumatologia @SMurcianaReuma @reumalorca5 @aesjogren @CatSjogren 👋👀⬇️🚨
Paradigm shifting article in the Green Journal of Neurology courtesy of cooperation between Neuro and Rheum at hosp in Hanover Germany. A cohort study of 512 "primary" #Sjogrens presenting to Neuro and to Rheum were evaluated for "strictly selected neuro symptoms." 1/n
@mariaj_morenom @AbrahamAubry @SEReumatologia @SMurcianaReuma @reumalorca5 @aesjogren @CatSjogren 2/n NB many of the most common neuro accompaniments to Sjogrens WERE NOT tested for (or were not reported) in this cohort including autonomics, HA, hearing loss, trigeminal involvement etc.) Despite this, 46% (!!) of #Sjogrens pts are #NeuroSjogrens patients.
@mariaj_morenom @AbrahamAubry @SEReumatologia @SMurcianaReuma @reumalorca5 @aesjogren @CatSjogren 3/n IMPORTANTLY, the authors take pains to note
1) Neuro involvement has been v underestimated
2) The disease course is more severe than previously anticipated BUT responds well to immunosuppression
3) ESSDAI issues--multiple neuro probs w same level activity only scored once so
Read 28 tweets
#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.
#Sjogrens commonly has #AutonomicNeuropathy. Most patients have lost the ability to predict how one feels day 2 day. Hr to hr. Even minute to minute sometimes. The days of predictable baseline function are gone for many #NeuroSjogrens patients.
Loss of this baseline functionality in #NeuroSjogrens #dysautonomia erodes ability to follow thru w plans. Steals ability to work full time or at all. Wears on friends/family. Eventually many are left disabled, unemployable, poor, alone & sadly unrecognized by MD's 4 many yrs.
Read 5 tweets
Lot of queries related to the classification criteria(CC) for #Sjogrens syndrome. Hence, this 🧵
The criteria are the result of a collaborative effort by researchers in the US & Europe.
PS:CC are for use in trials and not for clinical Dx
#MedTwitter #rheumtwitter Image
Read 9 tweets
While looking through case reports of #Sjogrens and renal tubular acidosis, came across a peculiar neurological demyelinating disorder...
A long 🧵
#rheumtwitter #neurotwitter #MedTwitter Image
Intriguingly, there were multiple reports of osmotic demyelination syndrome (ODS), aka central pontine/extrapontine myelinolysis.
#Sjogren has varied neurological features and its association with #NMOSD, a demyelinating autoimmune disorder is well-known but ODS is non-inflammatory and ...
🤔Neither Sjogren nor RTA is an established risk factor for ODS
Read 15 tweets
#Sjogrens Syndrome - Year-end thoughts.
Ever since I have been a rheumatologist, I have always found diagnostic delay distressing, and perhaps nowhere is it as prevalent as in Sjogren's.
I am summarising some of my thoughts in a short-long🧵
⭕️The experiences of the very brave and inspiring patients have brought the focus back on the diagnosis of #Sjogrens
⭕️Even in a tertiary care centre where there is so much focus on identifying #Sjogrens -the success of rheumatologist in making a provisional diagnosis of Sjogrens was only ~64.84%.
#MedTwitter #RheumTwitter
Read 14 tweets
Believers that #LongCovid is "all in your mind" because there are on specific biomarkers or routine diagnostic tests are "normal" need to look at other autoimmune/inflammatory disorders. In #MultipleSclerosis, or example, it took decades to refine the diagnostic criteria. 1/🧵
First, before MRI/CT scans were invented, many #MS pts were misdiagnosed with psych disorders, including hysteria. Spinal taps in MS patients did not always reveal abnormalities. Many patients had various non-specific white matter lesions in MRI, but some had few or none. 2/🧵
Some #MS pts had optic neuritis, but many did not. Some had a lesion in the cervical cord, and many did not. How do you make sense of it all? It took many years and several revisions to come with the diagnostic criteria that we use today to diagnose MS and MS variants. 3/🧵
Read 8 tweets
#ACR22 #ReviewCourse
Dr Sara McCoy on #Sjogrens & mimics

Nomenclature: Sjogren's disease Image
Tear films are complex, with 3 layers

Comorbidities & meds can deplete the tear film too

#ACR22 #ReviewCourse Image
Oral exam:

👄r/o other causes of dry mouth, e.g. angular cheilitis
👅check under tongue for salivary pooling
👅do a thorough tongue exam (lack of papillae)
🦷eval the dentition

#ACR22 #ReviewCourse
Read 13 tweets
Things I’ve learned from talking to doctors about fatigue (related to #sjogrens #migraine #dysautonomia ) a thread:
1). Be dramatic. Now is not the time to put a good face and minimize. Say if you’re bedbound, housebound, unable to do a simple errand.
2). Include technical terms like ADLs (activities of daily living) and PEM (post-exertional malaise). “Fatigue” is too vague and many clinicians don’t have the ability to imagine the level of fatigue you are describing.
Read 9 tweets
"What’s more devastating is that the next three struggles the researchers identified—constructing an explanation for suffering, negotiating with the health care system, and proving legitimacy—are all toxic side effects of modern medicine" 1/
Sjogren's patients are often treated as if their symptoms could not be that bad; many physical symptoms are psychologized, especially autonomic and other neuropathies which are labeled as anxiety or FND. Patients often feel abandoned or gaslit. #dysautonomia
My 2021 informal survey of 100 patients asked their biggest challenge living w #Sjogren's. The top answer was not symptoms, but the failure of doctors to treat it as a serious systemic disease. Patients often had to seek specialty referrals on their own. 3/
Read 8 tweets
If you cannot access an #MECFS doctor, following are suggestions to treat possible co-morbidities & get your symptoms documented in your medical record:

1) Ensure thorough work-up for causes of fatigue. Your primary care provider can order most of these tests: /1
This is a great resource for tests to request or check to see if you've had done to evaluate for underlying causes of fatigue: /2…
2) CARDIOLOGY to evaluate for POTS (Tilt Table Test) or NASA Lean Test can be done in office; at home test: an increase >30 bpm heart rate from supine to standing in adults may indicate POTS.

Treatment for POTS may improve some symptoms but need to find cardio aware of POTS. /3
Read 22 tweets
Some highlights from #Sjogrens Syndrome: Dental and Ocular Perspectives (a thread)

With Dr. Athena Papas and Dr. Esen Akpak

@SjogrenpowerAna @SjogrensCa
Reduced salivary production leads to more than just the symptom of dry mouth!
💠Decreased lubrication ➡️ difficulty speaking and swallowing
💠Loss of remineralizing saliva ➡️ cavities and tooth decay
💠Increased infections, including candidiasis and periodontal disease
Prevent cavities and tooth decay:
🦷Prescription fluoride varnish every 3 months
🦷High fluoride toothpastes (1.1%) once a day
🦷Remineralizing rinses like Caphosol or NeutraSal
🦷Chlorhexidine if any periodontal/gingival disease
Read 11 tweets
Q. What up doc. My #IBM patient doesn’t have #NT51a antibodies and my #SLE patient has #NT51a antibodies. I’m confused.
A: If only life wasn’t messy. 30 percent of #IBM patients don’t have #NT51a and false positives happen with #SLE and #Sjogrens which can cause #overlapmyositis.
Read 13 tweets
.@SarahbaxterSTM's argues that #fibromyalgia, #mecfs, #lupus, #depression, self-harming and #anorexia are caused by female ambition and fragility.

What's c. 1880 is new again.…
This is just so silly. In the 19th century, there was a panic in the medical profession (and among social commentators) about women becoming ill with neurological and "nervous" conditions because they were overworking their brains/nerves, which were naturally weaker than men's.
This “fact” was used to bolster the argument in favor of stopping women's formal education after age 16 and most certainly not letting them enroll in university.
Read 26 tweets

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