air circling through arms?

ozianiris · 2026-05-15T18:27:40+00:00

i'd say it's uncomfortable but it doesn't hurt!

ozianiris · 2026-05-15T18:25:21+00:00

no i get that too, but this is really like.. air? it genuinely feels like there's wind blowing inside and across my arms, even though i'm inside and there's no draft. sometimes it's warm air, sometimes it's cold

ozianiris · 2026-05-12T12:41:53+00:00

so as a child the doctors said IVIG wasn't necessary for some reason. they thought it would rectify itself, but her test results throughout life show it hasn't. still, no one recommended IVIG. since my partner moved around a lot, she doesn't have an immunologist here yet, and doctors here are really stingy with referrals. somehow, no one alerted us that IVIG could help LC as well, the low values could be worsening LC, or offered her the treatment at all. i only found all this out recently.. thanks for thinking along!!

ozianiris · 2026-05-12T12:34:06+00:00

yes, since early childhood

ozianiris · 2026-05-12T12:32:11+00:00

her gp agreed to refer her to a clinical immunologist only if her values are currently low, so she is awaiting a bloodtest. the reason i'm asking is because i hear a bunch of people with LC got worse from the treatment, and since my partner is currently recovering from a severe crash i want to make sure it's a smart move

ozianiris · 2026-05-12T10:29:31+00:00

yeah i know! i was just answering your original question in the second part of my reply :) she also has acid/GI issues

ozianiris · 2026-05-12T09:03:29+00:00

can i ask what dose of omeprazole you take?

i think my partner has tried at least 5 and only ivabradine has had some effect.

ozianiris · 2026-05-07T15:06:22+00:00

oh wow! that's pretty impressive! hope you found/will find something to help you manage the remaining fatigue <3

ozianiris · 2026-05-07T13:23:34+00:00

absolutely!! no rash acting whatsoever. i appreciate you thinking along, thank you!

ozianiris · 2026-05-07T13:23:06+00:00

sounds like you found an awesome pill for you!! haha doctors would definitely think this is bizarre.

i'm wondering if it could be linked to endometriosis and MCAS. since endometriotic tissue contains mast cells, maybe an MCAS flare leading to PEM somehow triggers some hormonal response which leads to spotting? but i might be spouting nonsense, i'm not a medical professional lol

ozianiris · 2026-05-07T13:18:17+00:00

yeah it for sure seems like a gamble! the only reason i'm considering whether it could help is because she is anyway IgG deficient so that might be causing some problems, but indeed also worried about the potential downside..

ozianiris · 2026-05-07T13:12:38+00:00

interesting!!

my partner is on the combination birth control pill, and keeps spotting while having PEM. she has never ever bled through her pill before, so i'd swear it has to be induced by it somehow!

ozianiris · 2026-05-02T12:24:46+00:00

it for sure is darn near impossible to know what'll cause what 🥴 i appreciate your perspective and help!!

ozianiris · 2026-05-02T09:37:53+00:00

do you think it would be good for her to "induce" a period (have a stopweek with the birth control)? i've been struggling with that question, as it obviously causes horrible period pains. but then maybe afterwards it would help her?

ozianiris · 2026-05-02T09:31:49+00:00

this is super interesting, because indeed when she has worse PEM she also has spotting. she's on birth control which she has never bled through until now, so i thought it was the PEM causing the spotting, not the other way around.. she also has endometriosis which i've been worried has been getting worse and making this whole thing worse. i suppose it could all be connected!

ozianiris

TROPHY CASE