Calling all amateur diagnosticians who know things about crashes and especially #AdrenalInsufficiency. Can you double check my work?

tl dr; Do I have progressive secondary adrenal insufficiency, even going back at least 13 years??? I’m severely crashed this morning from exerting myself a bit last night packing - this was triggered much more easily than normal and consequences worse than expected, and definitely worse than when we drove to Stanford last fall, and now I’m worried I’m not in a safe place to actually pack + more importantly travel like this.

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!

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 3.10g/L (RR = 0.72-1.25). Currently 2.7. I’ve also had positive Early Sjogren’s Abs… For about as long. The only time I had positive SSA/ANA was in 2021 when on IVIG, pre-Rituximab. When retested in early 2024 I was negative. There’s disagreement whether it was passive Abs from IVIG or real and nuked by Ritux. I still have positive Early SjD Abs.

All I got for Valentine's Day was chronic norovirus? I wish I was joking. My intestines have just been getting worse and worse, so Nice Internist ran some basic stool tests and HELLO. I'm not acutely ill with it, but I know exactly when I caught it - 3.5 YEARS AGO... I had normal brown poop before being admitted to the hospital Aug 2021, and while I was in there I suddenly started having pea soup green diarrhea, and it just never stopped. It improved a bit summer 2023 when he had me take antibiotics suspecting SIBO, but still not "normal".

I want to document my status @ 13 months off IVIG, for public record since my neurologist’s response was that my neuropathy was “stable” and “mild” despite my telling him the exact opposite several times… Note how as I decline I begin to look more like an #MECFS patient… For anyone new, I have severe Autoimmune Autonomic Neuropathy (aka. #Dysautonomia) + Small Fibre Neuropathy from #Sjogrens / #NeuroSjogrens, with #MCAS, sensory neuropathy, weakness, severe fatigue, GI dysmotility, loss of bladder sensation, tinnitus, voice weakness, dysphagia…

My 27 year old friend in Ontario did #MAID this morning. Nobody came to save her. She wanted to live, but couldn’t get the care she needed. She was medically neglected + abused into giving up, by this system that only sees us as a nuisance. RIP sweet girl. 💔#Care4ComplexCanada

https://twitter.com/arianek/status/1788005376585306205

I wish I could say more right now, but honestly I’m just kind of in shock. And angry. She was so young and loved life. She had multiple poorly managed medical conditions, that she was not getting adequate care for despite pleading for years. The system absolutely killed her.

💯 Here's my version for #Care4ComplexBC patients:
1. Internists as PCPs
2. Complex Urgent Cares (keep us out of dangerous, overwhelmed ERs)
3. Timely, funded access to out of province/country care if not avail locally
4. Patients right to choose/change doctors
5. #AidBeforeMAID

https://twitter.com/dockevinmcleod/status/1814517433841209495

Part of the reason @dockevinmcleod's post made me want to write up a complex patient's version of this list is that he talks so much about increasing efficiency + quality of care. The terrible "care" I've received in my life has wasted SO MUCH money + doctor hours in the system.

I feel so fucking trapped - in this room, in this house, in this neighbourhood, in this city, in this healthcare hell, in my diseased body. I’m relatively privileged + my mom is helping, but even I can’t find a way out. People aren’t meant to endure this with so little support. I keep coming back to the idea there should be a full fledged multidisciplinary clinic in Vancouver for complex diseases (a real one not the CCDP) for Dysautonomia/POTS, EDS, Sjogren’s, GI motility, MCAS, all the overlapping diseases of “the triad”. Canada needs one badly.

I needed to recover a bit before I was ready to post about this, but the reason I was offline for a few days last week was that after almost backing out last minute, we went through with the trip to Seattle for the autonomic and neuropathy testing. We got back Thursday night. 🧵





TL DR; The tests were strongly confirmatory of my disease. Both the POTS/Dysautonomia and the small fibre neuropathy (SFN). The neuropathy in my feet, which started burning again in early April, is extremely severe already, after being off IVIG since Xmas. I feel vindicated…

I’m sitting here outside listening to the pitter patter of the rain, and processing everything. And the thing that hurts maybe more than anything is being treated like nothing has happened to me. Like none of it was real. Like I haven’t suffered. Like I’m not seriously ill… Someone who suffered a stroke or who was going through endless cancer treatments would never be treated like this. My body has been devoured, my nervous system and brain damaged by other things instead. How is that any less devastating? Do I not deserve the same validation?

So, I just heard the one cardiologist in Vancouver who knows about POTS/dysautonomia is no longer accepting POTS patients. Let's add this to the tally, and see what care is left for complex patients in BC... (tl dr; Vancouver DESPERATELY needs a proper Dysautonomia + EDS clinic.) The one specialised autonomic neurologist (with knowledge of autoimmune dysautonomia/treating with IVIG), who briefly took on autonomic patients before closing her practice to them a few years ago, has now moved to the US. AFAIK nobody has been able to get on treatment in ~3yrs.

It’s funny that people like me get labelled as “anxious”, when really we’re coping as well as anyone could possibly expect, with levels and layers of stress, sickness, pain, uncertainty, PTSD, etc. that most people couldn’t imagine. Stop pathologising normal emotional responses! See also: Rational “fear” is not “anxiety” (for eg. how it’s used to pathologise caution around covid). Rational “sadness” isn’t “depression” (sadness and grief are totally normal). Not every feeling is a mental health issue. We aren’t supposed to be devoid of feelings!

I learned two things the week before that I’ve been processing/pondering/grieving: 1) In @lupuscyclopedia’s Q+A at the @SjogrensOrg virtual conference, there were a lot of people asking about neuropathy, and while answering someone’s question he talked about steroids… He said something about how you have to know when the right time is to use them, because depending on what’s happening, they can CAUSE nerve damage (and IIRC he elaborated on how they damage blood flow to the nerves). I was hit with an immense wave of grief. (Pred thread below:)

https://twitter.com/arianek/status/1628486190281408512

@raghu_venugopal Not a shred surprised either - this is NOT new or unusual. People are so naive about the state of healthcare and the hospitals. A catastrophic hospital admission (6 days in a waiting room) started my medical catastrophe that led to applying for MAID.

https://x.com/arianek/status/1778467550399246439?s=46&t=OeeCAgK0Hb0bspXSKyu1wg

@raghu_venugopal I went in for a severe undiagnosed medical issue (3 years later diagnosed as trigeminal neuralgia - why did a dozen doctors miss that when I told them all I thought it was neuropathic pain?) came out 75 lbs, unable to walk, bedsores, spent 5 days in another hospital “recovering”.

🧵 Dear fellow sicks: if you have tried everything, EVERYTHING to get better and your illness is still bad or even progressing, it is NOT YOUR FAULT. Not all illnesses can be halted with supplements or mindfulness or diet changes (don’t @ me if these worked for you that’s great). Sometimes complex illness, idiopathic ailments, and these “mystery” conditions eventually turn out to be autoimmune disease (eg.Sjogren’s, post viral illness), and the only thing they actually respond to is big guns immune modulation/suppression - mainstream medical treatments.

@chydorina I know I didn’t - because I was a CHILD. I was FORCED to keep up with my peers in phys ed and in school in general, even though it made me physically ill. I was pushed to excel in university and after even though I was just getting sicker and sicker. Nobody ever took my illness… @chydorina Seriously and instead I was treated like I was a bit lazy or a bit crazy and just needed to get it together and try harder. Nobody ever recognised and explained to me I was actually quite sick and making things worse by not stopping. Much the opposite.

Moved to a different room. The internist came and told me he doesn’t even believe the bad hospitalisation and prednisone and Rituximab did this to me. He doesn’t believe me that this wasn’t the natural course of my illness. He is only doing the scope out of obligation and said they won’t find anything and even if they do I can’t tolerate treatments anyway. And that if they don’t find anything that there’s no other help for me except seeing a nutritionist.

This thread is on my reaction to the unnecessarily prescribed high dose prednisone. I can’t believe I’m going to post these online but I’m all in at this point. The pics are just before, and then the videos are after ~3 + 5 months on 30mg a day. I can barely look at them. twitter.com/i/web/status/1… I’m rubbing my face because I can’t feel it. Before this, while sickly, I had excellent cognitive function, good mental health, + completely normal control over my body/movement, as well as normal proprioception and sensation aside from the new burning (see pinned post).

Quick update: Just waiting for the call to head in to hospital. Absolutely terrified after my previous experiences (at different hospitals) especially with what bad shape I’m in, but hoping somehow this won’t be as bad, and my internist will help protect me as best he can. I can’t do interviews right now or keep up with DMs or replies anymore (especially people asking questions I’ve answered dozens of times already) but thanks to everyone who’s tried to help, especially those who have the same condition as me or who have local medical connections.

What I would give to have my old pre-prednisone brain fully back. It’s slowly coming along, but I still feel so dizzy and disoriented and have trouble concentrating. I really miss my old brain. I’m so high functioning/sharp normally that even diminished some doctors… Didn’t believe how messed up I was. I was probably at best 40% of my normal capacity, at worst 10% for so long. That’s why it took so long to get on here and write about this. Maybe getting to around 70% now? I hate it. I miss reading, and just being able to rest and feel normal.

Quick check in - even with comments limited my #IAmTheFaceOfMaid post has absolutely taken on a life of its own. Not in a good way. And yet… 1.7M views doesn’t get me a GI doctor and the medical care I need to survive this. I’ve been so tempted to lock down my account but…desperate times. I KNOW there are doctors in #Vancouver who could help me if they wanted to. But my referrals, even if I can get them, always get rejected. I need someone WILLING as well as able. @DoctorsOfBC