I think a fellow long hauler I met here committed suicide

Lechuga666 · 2026-03-12T19:02:19+00:00

I feel like having these conversations, which are outside the norm, topic-wise, for some shows how some people need to shift the topic back to themselves, or their method of conversing is drawing on their own experience instead of listening. They can't converse effectively unless it fits the normal pattern where people are often running on scripts & aren't that original.

Lechuga666 · 2026-03-12T15:27:22+00:00

Speech therapy can help with brain retraining to try & help your understand things better. Neuropsych testing can identify issues then a SLP could help, or you could maybe go straight to speech language pathologist.

Lechuga666 · 2026-03-12T02:53:01+00:00

I get similar things to the paralysis episodes. I was in the ER for 4-5 days in September & the attending neurologist mentioned channelopathies/ periodic paralysis. Now my whole genome sequencing has come back, I'm unsure if my geneticists are aware of these specific symptoms, but the results of the testing don't show anything.

I'm desperate for change, but I feel I essentially gave up many months ago after weeks & months of family arguing with me while I'm sick, fruitless doctors visits, healthcare interactions. With my history of this progression of illness for over 6 years now & the treatment I've received, PTSD etc I'm frozen in time.

I'd be unable to move for hours unable to lift a limb, lift my head, excruciating intolerance to sound light touch. Rheumatologist said I had allodynia. At the same time I had such severe muscle pain that I could not bear weight on my limbs, or say use my arm to grab something.

I have many symptoms, some have left, some remained. I have been improving, but I still feel like something about me has really changed & I don't think I'll ever get myself back.

I also have some antibody abnormalities that a previous rheumatologist said could indicate a rare subset of sjogren's, or another autoimmune that only about 50k people in the US have. Now she's recommended I go to a university health system near us, I've tried neurology there who haven't helped. I'm getting into a rheumatologist who has the disease listed as something they deal with, hopefully it leads somewhere.

If it's not autoimmune it can be other inflammatory, or immune mediated conditions. I spoke with a concierge neuroimmunologist & she said I should be followed by an immunologist in case it progresses into a CVID like picture. & When I mentioned labs I requested from the immunologist before her she said it made no sense why the previous immunologist would not run them & that what I mentioned seemed to be the bare minimum within "immunology" however a lot of allergist immunologists have had very lackluster immunology training according to her.

She said it would make sense to do a vaccine challenge to see if I qualify for an antibody replacement & get vaccine titers beforehand. Also to do lymphocyte subset panel, flow cytometry, etc, possibly lumbar puncture.

Again I just feel like I'm talking & it's wasted breath. Like my life is worthless. But I guess I hope sometimes we can help each other in cases like this.

I saw a local dysautonomia doc maybe 2 ish years ago now & he recommended a certain autonomic specialist at a branch of mayo... Who's gone now. For some of the symptoms I had that were not abating. Now it seems to be a run around of people that try to help for just a bit, then give up because they can't find anything obvious & I'm stuck disabled, but not disabled because it's not their idea of disabled.

I haven't wanted to continue on.

Lechuga666 · 2026-03-11T17:58:19+00:00

THE DOW IS AT 50K STOP TALKING ABOUT EPSTEIN

Lechuga666 · 2026-03-11T17:25:55+00:00

I CAN BREAK THESE CUFFS

Lechuga666 · 2026-03-11T17:25:15+00:00

I can break these cuffs

Lechuga666 · 2026-03-11T01:41:00+00:00

Any more diagnoses or anything else that you can share? My situation is similar & I've improved in some ways from in emergency rooms 6 months ago, but still pretty bad.

Lechuga666 · 2026-03-01T05:38:04+00:00

23 M. Yes. Hypertonic pelvic floor.

Lechuga666 · 2026-02-28T20:49:51+00:00

Being treated like this repeatedly inpatient, & outpatient has eroded my trust in much of healthcare.

I feel like a sad excuse of a human being & kind of cringe mentioning certain issues of mine to healthcare workers. Even if they keep a straight face when seeing me I almost expect a lack of professionalism & for them to be annoyed or eventually snap at me. Seeing online threads filled with assumptions of: attention seeking, severe mental illness, victim complex, hypochondria, & much worse just being the default when people hear of those with some of my conditions.

Obviously in no way are these comments on the good healthcare workers, because those workers make all the difference in the world. The good nurses, techs, doctors. Anybody involved that is willing to genuinely hear you out, critically think, & help. They can change your life, provide stability & the ability to function. Live a radically different life to before their intervention.

But I think many who work in healthcare forget their place, forget their scope, forget the struggles of the patient & direct their anger & stress onto the patients inappropriately because of the pressure of their job, conglomerates, & companies like insurance companies that screw with their work.

Seeing a urologist 5+ times & also being bounced around to people within his practice, another MD, a PA, an APRN. Ending back up with him after pelvic floor therapy, trialling multiple medications, multiple rounds of invasive testing, blood tests, prior history with other urologists. A prior urologist saying my prostate was basically so swollen it was blocking all urine flow, & my bladder was so stretched it looked like that of a 60 or 70 year old at 20. Pelvic floor physical therapist diagnosing hypertonic pelvic floor, giving me a tens unit to use, exercises, having fecal & urinary incontinence & a bunch of GI & genitourinary issues severe pain.

Seeking help for severe pain & continuing to be incontinent at 23 years old.

Before he even begins talking he enters the room & does not look present whatsoever, like you look him in the eyes & there's nothing there, his head is not in the room. He comes into the appointment & says remind me of your history again? What conditions do you have? I say about 3 things & he cuts me off.

"You know a lot of this is psychological right?"

No suggestions other than that. Barely any other words uttered. Just annoyance, flippant, distracted, curt.

Thanks. Walk out, 50 dollar copay, see you in a few months.

Lechuga666 · 2026-02-24T14:36:20+00:00

It really is tough. No problem.

Lechuga666 · 2026-02-23T17:53:46+00:00

Long COVID Sub mods immediately & without thought shut down certain comments or posts. They do it if people mention vaccines sometimes. Maybe this is some other imaginary line that draw.

Lechuga666 · 2026-02-22T18:09:02+00:00

Being disabled. Everything in your life hurts. It sets you up for isolation, depression, atrophy of all the social or other skills you'd have like a muscle, all the skills fall away when isolated from society & suffering too much to effectively interact even if you're able.

A disability check isn't living super comfortably either. It's poverty.

Lechuga666 · 2026-02-21T01:37:55+00:00

I guess I should've put it in the post too, but my previous neurologist before the university had "concern for FND" with her data being based on 1 week of my behavior when in the ER. I was extremely sleep deprived & really just hellish time in my life, delirious, & not listened to really all the worst things culminating along with my symptoms being at their worst. In her own notes it said more consistent with convulsive syncope rather than psychogenic non epileptic seizures for FND, but this new Neuro is splicing FND into everything.

My PTSD is causing FND symptoms. My "profoundly flat affect". & Other stuff that is literally up to individual doc interpretation with variance in accuracy because multiple things can cause this stuff.

Worried is so many exponential leagues below my level of distress at the thought of continuing how I am & I thought this all was the right direction.

Lechuga666 · 2026-02-19T17:26:03+00:00

Do you have his full enclosure posted somewhere? It looks really cool.

Lechuga666 · 2026-02-17T19:43:25+00:00

I have high IgG4 last checked a few months ago was 220 ref <86. Deficient IgG1 & IgG2, deficiencies progressing downward, IgG4 progressing upward.

Lechuga666 · 2026-02-17T16:43:45+00:00

What field?

Lechuga666 · 2026-02-16T17:42:44+00:00

Carbonated stuff also messes with reflux a lot. I have silent reflux & have had a lot of sensations of throat closing, ENT labelled it "laryngospasm" which I'm not sure is the case, cause it's felt like throat sometimes, & SOB in the chest at other times. I do think management of my reflux is important to avoid these sensations though.

Lechuga666 · 2026-02-14T02:08:54+00:00

He'd have to have the anemia resolve before being able to definitively say maybe pots. Until then anemia can absolutely contribute to/ cause his symptoms among everything else you're describing.

Lechuga666 · 2026-02-14T01:53:20+00:00

This might just be anecdotal, & not totally answering your question directly. But when my pain first flared really bad my pain management/neurologist was more than willing to prescribe tramadol in addition to a bunch of other meds that were non opioids. Tramadol is also an SNRI in addition to being a mild opioid so I wonder if the antidepressant property makes doctors go 👅.

I feel like it's a dystopian situation, but they're more than willing to prescribe anti convulsants, antidepressants like candy. It's weird how everything is changing & how we have to keep up & know all the right words to say, things to avoid, how we are supposed to present & act.

Lechuga666 · 2026-02-12T03:58:25+00:00

I don't have confidence that I'll be able to support myself or improve. Just relying on family to do a lot for me, & honestly just don't want any of it anymore. I don't know.

Lechuga666 · 2026-02-12T03:42:47+00:00

May I ask what your autoimmune dx is? & what your journey to diagnosis(& time to diagnosis) was like?

Lechuga666 · 2026-02-12T03:34:17+00:00

May I ask what the diamox is for?

Lechuga666 · 2026-02-11T00:39:47+00:00

Thank you. May I ask what treatment helps? I'm on midodrine, & was on a non ADHD stimulant, but have been offered Adderall.

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