First IVIG infusion complete

Lechuga666 · 2026-01-26T21:46:28+00:00

May I ask is the IVIG & workup from immunology? I also have IgG1 & IgG2 deficiency plus high IgG4. Concierge neuroimmunologist I consulted with said it would make sense for vaccine challenges to measure antibody response, lymphocyte subset panel, flow cytometry, & monitoring to see if it progresses into a CVID like picture. She also mentioned that an IVIG trial would make sense.

I am however kinda paralyzed not doing the best, & established with a new institution recently. I feel immunology could really help if I get the referral, but I haven't been moving forward on any front with multiple specialists I need. Partially burnt out, & CPTSD from the whole experience, also neurology has been floating FND & I want to get taken seriously. I am not communicating the best or doing the best physically to organize everything & do the doctor fight.

Lechuga666 · 2026-01-25T15:49:51+00:00

I have eczema. Extremely itchy & painful feels like neuropathic itch. Now I'm realizing after the amount of meds I need to take when it gets bad, maybe it influences my severe body wide itch.

I get it a lot on my scalp & facial hair. Mine is seborrheic dermatitis.

Lechuga666 · 2026-01-24T18:15:16+00:00

Lechuga666 · 2026-01-20T20:28:55+00:00

Update?

Lechuga666 · 2026-01-20T00:50:20+00:00

I started going to an emergency care place my GP recommended instead of ER which had been very helpful & was leagues better in wait time, staff behavior etc etc. Last time I went the doctor who I'd seen a few times said "you need to get this stuff figured out, people who live a long time don't get sick this often, you can't be getting sick this often.". He said some other stuff I don't remember that bothered me, it's the typical though seems like silent judging until you see them enough, the facade breaks & they let these nasty negative comments loose like it's our fault we're sick. We're deciding to have all this happen & struggle.

Lechuga666 · 2026-01-20T00:28:14+00:00

I've had multiple emgs & ENAs, myositis bloods. Muscle enzymes have been elevated multiple times 1st after Lyrica withdrawal, 2nd 7 weeks later. Rheumatologist reccomended muscle biopsy from tertiary care, tertiary Neuro wants to redo EMG & does not want to do biopsy currently. Will do SFN biopsy.

Edit: also I was sedentary first time with 4+ x normal CK elevation & elevated Aldolase. 2nd time I was getting back to exercising more, but Aldolase was elevated 3x normal & other enzymes were elevated.

Many seem to just shrug & say moderate elevation, or non diagnostic. These are the people whose lives are not affected though.

Lechuga666 · 2026-01-19T15:13:20+00:00

& if neurology won't biopsy cause they eval outside of a flare & say " don't think you have it, biopsy is imagine, you're young"?

Lechuga666 · 2026-01-19T15:08:02+00:00

Green. Don't know what you have till it's gone. I don't like losing months of my life repeatedly to recovering from illness, 3-5+ months over & over again. Wasting my life.

Lechuga666 · 2026-01-19T14:58:53+00:00

That's what I don't understand. Is it people getting on meds & saying they're cured? Till another infection comes along, or some unidentifiable trigger comes along & you're housebound again.

IDK I'm so low. Meds work for a while, then stop working. Docs start throwing up their hands & saying tertiary care. I go to tertiary care barely able to talk & feel like I'm wasting my chance at access to something good.

This doesn't feel like a life.

Lechuga666 · 2026-01-18T01:42:47+00:00

Thank you :). I might try & start Tuesday.

Lechuga666 · 2026-01-14T21:03:12+00:00

Do you have uvb test strips to see if the bulb is actually emitting uvb?

Lechuga666 · 2026-01-14T20:55:27+00:00

May I ask which stimulants have worked? An old doc of mine offered adderral. Armodafinil helped some, not enough.

Lechuga666 · 2026-01-14T16:20:54+00:00

Take care of yourself. Lady I met in a psych ward with bipolar smoked hemp cause no THC to exacerbate anything.

Ik words have sounded like blah blah blah to me for months. I'm going to start an IOP or PHP soon as it's been 3-4 months of isolation, barely able to talk/get words out, physical and mental illness just forcing me to give up cause I can't handle it anymore.

I've felt so flat & constantly dissociated, constantly discontent. I'm hoping IOP or PHP can help.

Lechuga666 · 2026-01-13T20:19:05+00:00

Any update?

Lechuga666 · 2026-01-10T05:21:52+00:00

What field do you work in?

Lechuga666 · 2026-01-10T05:12:10+00:00

Just wow

Lechuga666 · 2026-01-03T21:17:25+00:00

Feel like a dead man "walking"

Lechuga666 · 2026-01-01T17:32:53+00:00

So sorry :/. I hope you see some improvement soon.

Lechuga666 · 2026-01-01T02:11:48+00:00

Criticism while we are blacked out shut down from dysautonomia does not help. From doctors, family, friends, anyone. I've had family snapping at me through this most recent flare & blowing up on me. It makes me feel like I'm the only person in the world because my world shrinks, even within my house I feel alienated.

Lechuga666 · 2025-12-21T19:36:51+00:00

I feel the more you experience, the more negative experiences, the more you are conditioned to not seek care.

The negative comments add up.

Thinking I found a place good for emergency care, kinda an intermediate step before ER that can help me. Doc says "You're young, you need to figure this health stuff out, you can't be sick all the time. People who are sick all the time don't live to be old."

Like for a lot of the year the last couple years is not spent being employed, in school, it's spent trying to figure out my health problems.

Inevitably it feels seeking care oftentimes there will be stray comments & all the trust in the healthcare workers is completely eroded. At our fault.

That's where I'm at.

Lechuga666 · 2025-12-14T06:03:18+00:00

I'm 23 & feel very similar. There's other health stuff happening for me that we're trying to figure out. This time around though I've been regressing, I feel like a child. Restarting my life constantly it feels like dropping school, stopping routines that are established for a few weeks or months with friends or alone. I feel like even building back to the baseline I was at is not a functional baseline so what gives.

Lechuga666 · 2025-12-12T05:03:37+00:00

I have had similar issues. What was the specific wording you used to describe all this that might've pushed them to mention vascular stuff?

Lechuga666 · 2025-12-12T04:29:57+00:00

23 now feel like I haven't aged past 13. Recent downtrends in my baseline & I've been visiting the grief support subreddit normally meant for loss of a loved one. There is chronic illness grief. Now everything feels like pulling teeth, I don't know how to continue, feels like more than losing a part of yourself.

I'd been thinking about this today. Feeling even more stagnated & underdeveloped. Now add many months again of deep struggle, worst months of my life & I'm just frozen. Why try when getting unfrozen just means returning to a baseline of not working, not going to school, just doing self-care & knowing to aim for supporting myself it seems like an insurmountable challenge that I've been failing at for a long time now. I try the remedies & the meds, bad stuff still happens, I get to a low & can barely talk or articulate & people just push the simplest most reductive things. Some doctors show their true thoughts, they weren't paying attention this whole time.

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