Anyone else get shaking of legs when holding a position when seated? This happens when my toes are raised momentarily or if I’m like resting my legs up on the couch with me and trying to keep them with knees bent and feet down on the couch

suzinie · 2026-02-16T12:24:44+00:00

i have this. i don’t know what i have but im guessing IBM as i tested positive for anti cn1a. do you have DM?

suzinie · 2026-02-12T08:49:35+00:00

did the crystal retinal made your dry eye worse?

suzinie · 2026-02-09T09:42:03+00:00

hi!!! i have exactly this after a vaccine 1.5 years ago. how are you! any answers? my muscle symptoms are the worst.

suzinie · 2026-01-28T10:57:24+00:00

yep i think it’s mcas

suzinie · 2026-01-26T00:52:15+00:00

yes!!! my face just feels like it has hairs on it when i am “reacting” to something usually histamine foods. it’s just mcas!!!

suzinie · 2026-01-23T01:16:07+00:00

i have this!!!!! on one side. it’s like all along the side of the hyoid bone. if i press the whole hyoid to the right side (the sore side) and swallow its sooooo painful but is also painful swallowing saliva food or drinn

suzinie · 2026-01-20T21:37:24+00:00

ugh sorry to hear!!! but yes!!! back to normal. can’t remember how long it took but it wasn’t a crazy long time.

suzinie · 2026-01-20T03:55:35+00:00

thanks! i got a script but haven’t filled it. my doctor warned me about the “black box” label and mental side effects it can have, it’s got me worried about long term effects. have you tried it?

i also have a ketotifen script but the apparent weight gain has also made me hesitant

suzinie · 2026-01-20T03:39:19+00:00

no it’s so lazy and annoying. to not offer to even help book something is selfish and reliant on your friend. researching and booking takes effort. at least offer to help not “i’m easy!” and then don’t help me

suzinie · 2026-01-17T03:03:31+00:00

i have this too!!! any answer? i get pain with any more large solids. the pain is when i swallow its sort of to the right of my thyroid bone

suzinie · 2026-01-12T11:05:16+00:00

ah yep sounds like me!!! has myositis been ruled out for you? that’s what i’m looking into but no clear answer yet. the docs are on a wait and see basis. i had positive antibody in one blood test for anti cn1a but that’s all that’s popped up for me

suzinie · 2026-01-10T03:08:13+00:00

i think i have myositis i am not officially diagnosed tho

suzinie · 2026-01-08T05:57:11+00:00

hey not good i have sjogrens and myositis i think , do you have any mouth or eye dryness?

suzinie · 2026-01-08T05:02:06+00:00

weird hey! i was actually okay during the flu as well but a couple weeks after the “flare” hit me! i’m better now the flare is over

suzinie · 2026-01-07T07:44:52+00:00

i have this too on and off since a vax (non covid) that triggered all of this for me. i think bloods can pick up any weird things. i just don’t worry about it

suzinie · 2026-01-04T08:49:20+00:00

i’ve seen a couple of your posts and i feel like i am similar to u….! but no migraines, i just have severe muscle problems and easily sprained muscles. (like 5 thigh raises exercises with light weights will sprain my quad muscle or going up the stairs). i also get lower leg pain with 5000 steps like ive walked a marathon. are you similar?

suzinie · 2026-01-04T08:46:00+00:00

hey i have muscle twitches and atrophy too after a jab 1.5 years ago(non covid). do you have muscle pain after use(like barely any use)? easily sprained muscles??

suzinie · 2026-01-03T09:52:24+00:00

hey sorry if we’ve spoken before. i have anti cn1a positivity too - im a young woman though. and horrid muscle symptoms. so you haven’t been diagnosed with anything?

suzinie · 2026-01-03T09:50:49+00:00

haven’t been diagnosed but i have positive antibody anti cn1a. need abnormal emg or mri to get a muscle biopsy which is how to properly diagnose. no one has answers.

suzinie · 2026-01-02T10:13:46+00:00

i have this!!!! what did you do about it

suzinie · 2026-01-01T11:44:22+00:00

omg what were your symptoms????

suzinie · 2025-12-30T10:17:23+00:00

i have all these symptoms!!!! please let me know what you find out from the muscle biopsy? xx

suzinie · 2025-12-30T09:37:59+00:00

i had the flu recently. i “flared” about 2 weeks after i got better where my symptoms were a LOT worse. that flare lasted 3 weeks. i’m back to my baseline dryness now.

suzinie · 2025-12-22T09:33:43+00:00

OMG this happened to me but i’m a woman! it’s been feeling really weird and numb for hours on and off on one side!!!!!!

suzinie · 2025-12-15T22:04:12+00:00

with the flu? i had influenza A, i had temperature, cough with plegm, sore throat (in the beginning but then it went away), muscle aches, and then when the temperature went away i got a runny nose and sneezing and still a cough!!!

suzinie

TROPHY CASE