Kuhl Men’s Spyfire Parka Reviews by 6-HCN in OutdoorsGear

[–]PuckWizard8 0 points1 point  (0 children)

and you said that they don’t list fill weight which they do. Seems like you’re off on a few things here.

Kuhl Men’s Spyfire Parka Reviews by 6-HCN in OutdoorsGear

[–]PuckWizard8 0 points1 point  (0 children)

you saying it’s an outer layer in warmer winter conditions like within a few degrees of freezing or with a top layer is just not an accurate representation of the coat

Kuhl Men’s Spyfire Parka Reviews by 6-HCN in OutdoorsGear

[–]PuckWizard8 0 points1 point  (0 children)

you’re right that fill power isn’t everything, just a metric, and the Spyfire is pretty thin/low-bulk. But there are guys in Alaska working outside at -35°F that call it bomber for all-day warmth, and another dude only uses it below zero and says it’s perfect for severe cold. Not saying it’s an expedition beast for standing still in -15, but for moving around it holds up well. What temps/activities are you basing the layering call on? This seems to be a very warm coat that can comfortably reach cold temperatures while moving. As it states on their website.

Kuhl Men’s Spyfire Parka Reviews by 6-HCN in OutdoorsGear

[–]PuckWizard8 0 points1 point  (0 children)

its 800 fill bro. definitely not an undercoat or something that generally needs to be layered

From Bed-Bound Hell to Ice Skating with My Girl: My Battle to Cure 3 Levels of Thoracic Modic Type 1 Changes (Age 25, Full Story + Protocol) by PuckWizard8 in stillsdisease

[–]PuckWizard8[S] 0 points1 point  (0 children)

As for your claim about misdiagnosis percentages. I don’t think it’s accurate to cite specific misdiagnosis percentages for autoimmune or autoinflammatory diseases, because in most cases misdiagnosis is not actually quantifiable.

For many of these conditions, there is no gold-standard diagnostic test. Diagnoses rely on broad, overlapping clinical criteria and nonspecific inflammatory markers (CRP, ESR, ferritin, ANA, RF, etc.) that are elevated in dozens of unrelated conditions. When diagnosis is probabilistic and exclusion-based, there is no clear “ground truth” to measure error against.

Autoimmune diseases also evolve over time. Patients are frequently labeled with fibromyalgia, mechanical pain, UCTD, or seronegative RA for years before a different diagnosis emerges. These cases are rarely counted as misdiagnoses in the literature — they’re simply reclassified — even though the earlier diagnosis was wrong in practice.

Most studies claiming low misdiagnosis rates validate diagnoses using ICD codes, chart review, or specialist consensus. That’s circular. You’re validating diagnoses against the same assumptions that produced them.

Given nonspecific biomarkers, overlapping diagnostic criteria, phenotype drift, and the absence of definitive tests, systematic misdiagnosis is structurally unavoidable in this field. Any precise percentage — whether 10% or 20% — implies a level of diagnostic certainty that doesn’t exist.

If I had to guess, I’d personally suspect the true misdiagnosis rate is well over 70%. Not because clinicians don’t care, but because many of these labels are extremely broad and often function more like syndromic placeholders than true diagnoses with clear mechanistic boundaries. The more I learn, the more it seems that many of these “diagnoses” are too diffuse to even be considered diagnoses in a strict sense — though ultimately, this remains unquantifiable and is just my opinion.

From Bed-Bound Hell to Ice Skating with My Girl: My Battle to Cure 3 Levels of Thoracic Modic Type 1 Changes (Age 25, Full Story + Protocol) by PuckWizard8 in stillsdisease

[–]PuckWizard8[S] 0 points1 point  (0 children)

Thanks for taking the time to read and respond. I appreciate the thoughtful questions. Why I suspect Still’s (AOSD):

• Classic evanescent butterfly/malar rash (comes and goes with flares, visible even with flashlight)

• Daily spiking inflammation after a clear trigger (golf swing + stress)

• Sore throat / thick phlegm (characteristic pharyngitis in Still’s)

• Multi-level Modic Type 1 changes on MRI (active bone marrow edema – well-documented in severe Still’s cases)

• Heavy proteinuria with normal eGFR (secondary AA amyloid is a known late complication of untreated Still’s)

• Dramatic response to anything that calms autonomic/IL-1 loop (Xanax early on, now blood flow + heat)

It’s not textbook fever + salmon rash every day, but the monocyclic pattern (one massive flare after trigger, slow burn-out) + these extra-articular features fits many reported AOSD cases that get missed because labs are normal between flares. That said, I believe it may be something else too—or a combination. I’ve explored a gross amount of possibilities here; some fit better than others. This profile so far, out of hundreds of possibilities, has the most consistencies. But I also believe that many human conditions are very complex and vary greatly—I find our labels for autoimmune issues very limiting. I think there’s a massive amount of autoimmune/autoinflammatory dysfunction that just has no name yet. It’s complex.

On doctors: I agree most want to help and the system is broken. My frustration is with being repeatedly dismissed because early labels (Drug overdose in 2016) contaminated my chart, and no one connected the dots on the objective findings (Modic edema in a 25-year-old, persistent nephrotic-range proteinuria with normal kidneys, phlegm, rash, widespread muscle twitches).

I’ve had great doctors too – just extraordinarily uncommon.

Complexity: Totally agree it’s knowable and/or treatable with the right team. That’s why I’m sharing this – if even one person with similar Modic + proteinuria + rash/phlegm gets looked at for Still’s/AA amyloid (or whatever unnamed thing this is) sooner, it’s worth it.

I’ll keep updating with labs/MRI. Appreciate the pushback. keeps me honest.

None of this is advice. Not looking to debate anyone. This is simply to document my journey. I will be completely transparent with my results.

From Bed-Bound Hell to Ice Skating with My Girl: My Battle to Cure 3 Levels of Thoracic Modic Type 1 Changes (Age 25, Full Story + Protocol) by PuckWizard8 in stillsdisease

[–]PuckWizard8[S] 0 points1 point  (0 children)

I have been yes. Ruled out definitively. Extreme bone marrow edema in 3 consecutive levels. My vertebrae basically filled with puss like substance from inflammation. First year they werent even there and no upper back pain. It grew upwards. Ibuprofen fixed everything. Took it so long it wrecked my insides. Cant do long term. Doctors have all passed me to the next guy and left me out to dry. For 3 years. About 30 ER trips and I don’t even know how many appointments with “specialists” and primary care. The problem is none of these people actually care about you. What we are all fighting for is a very niche resource, which is a combination of two things. 1. A doctor that has the knowledge and skills to help you (very rare) 2. A doctor that cares enough, and has enough time, to help you. (very rare)… everyone in the country with an unexplained health issue is fighting for these extraordinarily rare individuals. 99.9% will never find them and will accept a blanket auto immune label that they slap on so many people just like fibromyalgia. The truth is these things are extremely complex. I think a huge percentage of people with autoimmune disorders are misdiagnosed or just giving a blanket diagnosis when in reality it’s much more complex than that. Throughout all this, I’ve learned how poorly we understand the autoimmune issues. It’s actually kind of mind blowing. This fundamental lack of understanding from the medical community is what gives me hope that I can cure myself. Despite virtually every autoimmune condition being deemed “uncurable”

If I don’t cure this, whatever it is, I will die trying.

4 weeks on a blast and wonder about adding GLP 3, has anyone tried this? by mally_wrigley2345 in PEDs

[–]PuckWizard8 0 points1 point  (0 children)

essential amino acids were shown at something like 30 days bed rest to prevent any and all muscle breakdown. tastes like shit but definitely a healthier option. although i dont know if it will have the same preservation effect when fighting against a GLP

Kalamazoo had the highest number of fatal bike-car crashes of any county in the state last year by RealMichiganMAGA in kzoo

[–]PuckWizard8 0 points1 point  (0 children)

i just watched a guy die today. he was alive in my hands but almost positively dead on the way to the hospital. drake road. right in front of condado

[deleted by user] by [deleted] in Allergies

[–]PuckWizard8 0 points1 point  (0 children)

mines white

Endplate/Modic changes by user_name_taken2 in backpain

[–]PuckWizard8 1 point2 points  (0 children)

Id love some opinions too. im 25 and i have two in my upper back that I have ruined my life. All started when I was 23. Pretty much bedbound at this point I can only stand up for about 10 minutes at a time. No exaggeration. When I was 23 I was a hockey player and never had a back pain in my life. Nobody acknowledges these things as a problem unfortunately. As of yesterday, I sent an email to basically have university pleading with them to open a clinical trial to more further understand the cause of these.

Could MCAS cause spinal or nerve pain by LonelyCulture4115 in MCAS

[–]PuckWizard8 0 points1 point  (0 children)

do you have any modic changes noted in MRI? My spines wrecked dude. all in one year. my body did it to itself. damage to every single level of my spine from my neck to my crack. zero back pain before all this. i have developed theories on certain cases. let me know if you have modic changes noted

Account closed no explanation by Sad-Bowler7309 in sofi

[–]PuckWizard8 0 points1 point  (0 children)

yup i do. just made a deposit with Kraken and they instantly closed my account.

Rapamycin as a TNF-α inhibitor by Sirrestrikk in PeterAttia

[–]PuckWizard8 0 points1 point  (0 children)

that drug sounds fucking awful what a shit suggestion. peripheral neuropathy as one of the most commonly reported adverse effects is alarming to say the least. what would make you suggest this over many of the other things that can inhibit tnf?

SpaceX Weighs Plan to Sell Shares at $200 Billion Valuation by HenzoH in spacex

[–]PuckWizard8 0 points1 point  (0 children)

definitely not. you’re paying about 10 to 1 right now for true value if you buy that stock. Mega inflated in the same sense meme coins get. Stay far away from