Top Tweets for #GoodDoctors
#NeuroSjogrens is a terrible disease, and it’s not given the weight it deserves in the medical community. But it could be less terrible to live with, if there were 1) effective, accessible treatments (coming soon for seropositive pts), 2) more #GoodDoctors who take an interest!
@bs_mamire And it IS a terrifying disease - half because of how severe it is, but half because of how lacking the medical support is right now. One half could be fixed, imagine that!
Taking the time to write this is so appreciated… #GoodDoctors🌟
The article this is in response to should never have been published. It fuels discrimination + ignores the reality that patients are HUMAN. Some genuinely *feel* worse, some just *cope* worse, NONE deserve disdain.
🩺 My letter, "Living alongside your chronic illness: No two patients are alike," in response to an opinion published in @bmj_latest. I discuss the issues of resilience and ableism in #chronicillness. ⚕️
#MedEd #PatientCare #Ableism @Jacobs_Med_UB
https://t.co/FQRdAJICC7

@kprather88 6 years of active air filtration in a busy MD's office as well as the use of N95+ respirators has managed to keep a highly vulnerable group of patients infection free so far. To my knowledge - thank you, Professor Prather.:))
#GoodDoctors 🌟 listen to patients - and believe their reports of their own experiences and symptoms. #PatientCare #BelievePatients
I start each encounter with “I have read the triage note but i like to hear it from you so tell me what’s bringing you in”
4 reasons for this:
1. Patients include more details
2. Note can be wrong
3. I need to ask more/different Qs
4. The way pt speaks is part of the assessment
#GoodDoctors! 🌟 Do you want to learn more about how to help complex and post-viral illness patients?
@amaticahealth has set up a Clinician network to support you! More info on their website, to help you help us:
https://t.co/ZkPdLcoe59
Laying in bed watching @CortJohnson’s MUST WATCH interview with @NBoydGibbins + @JackHadfield14 from @amaticahealth. I continue to be blown away by their knowledge and approach. (Admittedly this is also bringing up so much grief that I’ve suffered such severe medical injuries, which will limit my ability to recover even with better diagnostics and treatment options, but I digress.)
I absolutely believe these guys, and some of the other researchers like Dr Moreau at @OpenmedfCanada + @polybioRF / @PutrinoLab @VirusesImmunity are going to get us to a point where we understand and can treat these diseases - the speed of research progress is mind blowing, after almost 4 decades of illness.
One of the biggest challenges IMO will be getting stodgy public medical systems, like we have in Canada and the UK, to actually progress and adopt modern testing and treatments in a timely manner.
“Amatica Talks About Their Revolutionary ME/CFS and long COVID Gene Expression Work” https://t.co/ZJOKC5lfZw
#Care4Complex

Medical professionals + #GoodDoctors!
@SjogrensOrg (who doesn’t seem to be posting on X anymore) has a CME on January 30th all about new treatment options for #Sjogrens! No more “there are no treatments, only symptom management” for this serious systemic illness! Please consider attending and learning how to finally help this long neglected patient population. And tell your colleagues!
Register here: https://t.co/O5ap8lMKZp
@NeuroSjogrens @SarahSchaferMD @lupuscyclopedia @Rheumat_Aravind @Janetbirdope

#GoodDoctors 🌟🙏
If being “one of the last two masked” means patients and I get sick less often, I miss fewer shifts, and don’t bring home a souvenir virus, I’m okay with that
Health care has never been about blending in: it’s about keeping people alive. The 😷 helps do exactly that #oneofthetwo

This post on small fibre neuropathy from #NeuroSjogrens blew up a bit - the last six months or so it’s not uncommon that I get doctors (neurologists, but also rheumatologists and other general med) from India popping into my replies.
Can I just give a big 🙌 to the #GoodDoctors in India? You are really up to speed on this, and showing such enthusiasm over learning more about it so you can help patients. I rarely see this knowledge or enthusiasm in Canada, and it is very refreshing!
If doctors saw the volume of Small Fiber Neuropathy patients in the online forums getting diagnosed with Sjogren's Disease, their minds would be blown. It's increased massively in the past year, thanks to patients spreading the word and then requesting testing. I'm starting to think it's possible the vast majority of "idiopathic" SFN cases are actually undiagnosed #NeuroSjogrens.
But especially outside the US, so many patients are trying to access IVIG for SFN, Dysautonomia, and Sjogren's, and are being dismissed by their neurologists or rheumatologists. And we aren't being allowed to participate in clinical trials or access new treatment options like #Vyvgart and #Nipocalimab, which are restricted to patients who meet the research classification criteria.
We desperately need better medical education and treatment options for this serious systemic disease, which in the Neuro Sjogren's patients is very often negative for SSA/SSB antibodies (and sometimes even the lip biospy), but positive on the "Early Sjogren's" panel which is only available in the US. This huge population of seriously ill patients (mostly women) is being badly neglected.
@NeuroSjogrens @SarahSchaferMD @SjogrensOrg #Care4Complex #Dysautonomia
Doctors (even ones with “SJW” in their username) defending FND is what is “wild”. They really won’t stop. Ever. No matter how much harm they do. I hate the medical system and 99.9% of the people in it. (Sparing 0.1% for the true #GoodDoctors, they do exist but are too rare.)
@blondemedSJW @SalvMattera There’s no point in me repeating myself, I know I won’t convince you that your entire profession is deeply harming patients with this BS.
I have a request for all the #GoodDoctors 🌟 out there. I know it goes against your conditioning and training, but PLEASE - stop covering up and making excuses for your colleagues when it comes to medically complex and harmed patients.
After what I’ve been through, being told, “I’m sure they were doing their best” is extremely harmful and retraumatising for me. If that was their best, they need to their licenses and do jail time. If any other person out on the street had harmed me like this they would, but at least in Canada, thanks to the CMPA, doctors are above the law. It’s not that they’re not doing harm, it’s that there are no repercussions.
Just because YOU would not have behaved a certain way or made certain mistakes does not mean they didn’t. So please take a beat, and don’t gaslight patients when they tell you what they’ve been through, even if the story sounds extreme.
And most importantly, hold your colleagues ACCOUNTABLE instead of making excuses for them. I know you see things, hear things, and turn the other way. Nobody else is doing anything to protect us, and we really need you challenging them to step up and do better.
I know you have a lot to deal with, and you don’t want this to be your responsibility too, but people - especially women with complex illnesses - are suffering serious harm and medical neglect. And it does not need to be this way.
#Care4Complex
Wow, the doctor out east screening me for the clinical trial who ran all these other tests actually emailed me back late last night after getting the results 🤯 (bless him for not waiting until my follow up in December #GoodDoctors 🌟), and told me not only is the (flagged) DHEA low, but the (unflagged as there’s no lower limit used in BC) ACTH is also low! The adrenal insufficiency must be legit.
He asked if I ever saw endocrinology after getting the low tests back in 2013/14, but I did not - the functional med doc who ran those did not send me, and when I later saw endo for my osteoporosis and asked about the low salivary cortisol, he dismissed that test as not validated, and that was the end of it.
12 years later, it’s looking like this entire time I’ve had some kind of secondary adrenal insufficiency (and maybe partial hypopituitarism?), on top of my POTS/dysautonomia and unclear metabolic issues, causing these severe post-exertion crashes and fatigue, and I imagine potentially is what’s causing these “paralysis” like weakness episodes that have been worsening especially since the prednisone debacle.
This was blatant and straightforward, and simple to treat, but missed for over a decade after having confirmatory test results. Why? Because despite bringing it up over and over, and even explicitly asking for an ACTH stim test numerous times, my “complexity” continued to cause confusion and prejudice even for such a basic medical issue that any doctor should have been able to identify. Not only that, but now it makes the damage from being overdosed with prednisone for months even more catastrophic as it surely worsened the condition, hence my ongoing difficulty recovering, on top of my untreated disease relapse.
All it took was sending my medical history (but not my mess of a file) to an objective, unbiased doctor outside BC. He immediately identified it, ran tests, got results (which made me go digging in my records and uncover all of this), and HOPEFULLY will result in me finally getting this treated and regaining some function. Better late than never I guess, but if this was at the root of my near lifelong fatigue and crashes, my god - the decades of debilitation and sickness and suffering that could have been easily avoided.
There are probably several lessons to distill from this, but the one that sticks out to me is that “complex” patients are failing to access even basic medical diagnostics, because doctors mentally check out (or don’t have time to check in) and cannot see the forest for the trees. Methodical assessment and testing of even “vague” long standing symptoms can result in concrete, actionable results with real benefits to the patient.
“Complex” often isn’t mysterious or undiagnosable, it just means multiple intertwined conditions, which can often be teased apart with methodical, objective assessment. That doesn’t happen when garbage diagnoses like CSS/FND and even legit diagnoses like MECFS + LC or mental illnesses are allowed to be used as an excuse not to do further diagnostics.
#Care4Complex #AdrenalInsufficiency #Dysautonomia #NEISVoid
#GoodDoctors supporting our cause is one of the most important ways to make this become a reality. It could change everything and save lives. Thank you! 🙏
#Care4ComplexCanada
Hey #GoodDoctors of the world - you need to start calling this patient-hating, patient-mocking, gaslighting BS of your colleagues out. This behaviour is killing vulnerable women, and it needs to stop.
#MedicalGaslightingKills (mostly women)
I don’t understand why doctors who HATE PATIENTS, and HATE SICK WOMEN practice medicine. These misogynistic, paternalistic, sadistic shitheads are killing people with medical neglect and laughing about it. #Care4Complex
These Indian specialists are kicking Canadian MD butts! He has #Sjogrens SFN with Autonomic neuropathy in the differential! Bet this doc would NOT have missed my diagnosis, or just be letting me slowly rot to death without any treatment. #NeuroSjogrens #GoodDoctors 🌟
Sensory neuropathy isn’t one disease.
It’s a pattern that only makes sense when you match it with age + phenotype + red flags.
Here’s the playbook you’ll want at your fingertips. 🧵
#Neurotwitter , #Medtwitter , @MarcusVPinto , @nirmalregency , @aditya_gan3500 , @witchdrkochi
@MarcusVPinto your inputs will be highly appreciated

Continuing to read through the @CoRESinai @PutrinoLab Infection Associated Chronic Illness manual, and it is just JAM PACKED with great info so far. It occurred to me to do a couple searches… do you know what’s not in it? 👀👏
#GoodDoctors 🌟 #Care4Complex

Really proud of my team for getting this out. It has been a heavy lift. When we opened the Cohen Center for Recovery from Complex Chronic Illness, we wanted to create a place that could provide the very best of care for people with #LongCOVID, #MECFS,
1/
https://t.co/1FvrjNXabO
#GoodDoctors 🌟 care about making as precise a diagnosis as possible. Diagnostic precision = proper treatment choices = better outcomes and fewer of the kinds of mistakes I suffered. #Care4Complex
Good point! But we must also keep in mind that these neurological manifestations—autonomic dysfunction, ganglionopathies, CIDP-like features, trigeminal neuropathy, cognitive issues—can also be seen in other autoimmune diseases like SLE, sarcoidosis, systemic sclerosis, vasculitis (e.g., PAN), mixed connective tissue disease, and even in paraneoplastic, infectious, or metabolic conditions.
So while their presence increases the suspicion for Sjögren’s, they are not specific—and diagnosis must be made in a broader clinical-serological-radiological context.
Also, anti-Ro52 positivity is not exclusive to Sjögren’s. It is seen in 15–20% of patients with myositis, systemic sclerosis, and even some infections or malignancies [1,2]. So, a positive Ro52 alone should not label someone as having Sjögren’s.
Interestingly, up to 40–60% of Neuro-Sjögren’s patients may lack classical sicca features, and present solely with myelitis, sensory ganglionopathy, or autonomic neuropathy. So both overdiagnosis and underdiagnosis are possible—hence, clinical judgment and pattern recognition remain key.
Let’s always interpret the patient's full story—clinical symptoms, serology, imaging, and evolution over time—before anchoring to a single label.
👏👏👏 It’s about time. Now if we can just get seronegative disease and #NeuroSjogrens guidelines updated too. So thankful for all the #GoodDoctors working on this.
#Sjogrens #Care4Complex
🔥 Wipe "Sjogren's Syndrome" and "Secondary Sjogren's" from our vocabulary!
It is #Sjogrens disease and "Associated Sjogren's" as a disease standing as tall as #SLE #lupus #rheumatoid arthritis #myositis #scleroderma! This article is history in the making
https://t.co/DPaxb7rIxr
Congratulations to the @SjogrensOrg and the International Nomenclature Committee for spearheading this important project!
My Seattle neuro is so good, and so kind. 🥹 #GoodDoctors I just wish I lived there, or there was a proper arrangement for care for BC/Canadian patients (which he has several of now), so I could actually get direct, ongoing care from him including prescriptions.
#Care4ComplexCanada #Care4ComplexBC #bcpoli #BCHealthcareCrisis
Dr Rabi, I don’t know you in person but I have seen a shred of the kind of work you’re doing from afar, and I - someone who’s been deeply harmed by the medical system and is very cynical about doctors now - can tell you’re one of the #GoodDoctors. It’s always the people doing the most who feel the most inadequate, because they know how far from the ideal things are. 🫶
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