Twitching: Started having twitches/spasms in... - PBC Foundation

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Twitching

cazer profile image
12 Replies

Started having twitches/spasms in front liver area.feels quite odd!doesn't hurt .sometimes single pulse or multiple ripple effects.does anyone else get this and what does it mean.thanks

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cazer profile image
cazer
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12 Replies
PBCRobert profile image
PBCRobertPartner

Hi, Cazer.

This wouldn't be something I've heard about via my PBC experiences. As with any changes, this would ideally be checked with your consultant.

Do, please, let us know what comes of that conversation, though... :)

Yours,

Robert.

cazer profile image
cazer in reply to PBCRobert

Thanks Robert. If I find anything out will let you know.

cazer profile image
cazer in reply to PBCRobert

Hi robert,that turned out to interesting. ..amount of pbcers with same thing thought it would just be me.i suppose it's a bit like the brain ....we don't know what it all does!!best wishes cazer.p.s

Should we be telling docs consults of name change or will they have been notified. ?

karlakou profile image
karlakou

I have that too! I don't know exactly what it is though. It goes on and off though. I will have it for weeks really bad and then I won't get it again for weeks. It is so annoying. I got it especially bad after I had surgery. I would like to know too!!!

CheshireEm profile image
CheshireEm

Hi, I occasionally get something that sounds similar. It's like a twitching eyelid but on a bigger scale at the top of my liver. My Consultant tells me it's not related to PBC and the liver can't twitch but I definitely feel something. I haven't seen any correlation between the extent of twitching and any ups and down on my LFTs so between that and the consultant looking at me like I'm nuts I don't believe it's a negative sign.

Take care

cazer profile image
cazer

Thanks folks.feel better for knowing im not mad! Its as you say its like a twitching eye just bigger. !

Pnt1409 profile image
Pnt1409

I get it too! I'm. 34 year old female, stage 1, on Urso for 9 months now. I had the twitching/little twinges for about a year now. My liver specialist told me that about 1 in 5 patients with PBC experience it, however, just because it's happening, that doesn't mean that anything is wrong. I hope this helps.

Wendy29 profile image
Wendy29

I know exactly what you mean - like reverberations - very odd feeling - but I don't think it's anything to worry about - I've never even mentioned it to my consultant

boneytoys profile image
boneytoys

Interesting

I've been diagnosed 8 years and am basically asymptomatic!

I get it too

I call it a Liver flutter..like its my liver telling me we are in this together...

And I've had it for about a year.i haven't mentioned it to my specialist because he also says the liver doesn't have nerves and i do sometimes have an ache in my liver like now. He says it's not my liver....

SuzCurran profile image
SuzCurran

Same, i get the twitching and sometimes pain, then the doctor tells me i cant have pain in my liver? hmmmmmm but i do! we all seem to be in the same boat, iv never mentioned the twitching.......the mind ponders

dollydaydreams profile image
dollydaydreams

I get a fluttering (popping feeling )as well and when i check my pulse ( just to make sure I am still alive) it sort of beats once -a gap and then two or thee beats faster together, Thats the only way I can describe it, I have never thought about it being connected to the liver and just thought it was anxiety or wind.

emerich profile image
emerich

Think I've had similar, although it actually reminded me of feeling the baby move late in pregnancy, no pain at all though.

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