I was diagnosed with PBC in 2011 by blood work. Initially they removed my gallbladder thinking my liver panels were elevated due to it. Since they were still elevated after removal, they finally diagnosed the PBC. It's been a roller coaster ride ever since!
I occasionally have a twisting feeling just under my rib cage that is so painful at times that I will double over. This is not the same as the mild liver pain that I get at other times. It literally feels like something inside of me is "twisting" much like a rag when you are wringing water out of it!
Does anyone have this occur? I have been a non-responder to the ursodiol as well. Although my levels have come down tremendously, they are never quite normal. Got my latest bloodwork back last week and my alkaline phosphate was 292 about double what it should be, ALT was normal, AST was 58 (normal approx. 37), and my white blood count has dropped from 2.68 in February to 1.91 this time. Now, I've got to follow up with my oncologist. That is so scary to me. A couple of years back, I had to have a bone marrow biopsy due to my platelets dropping to 30,000. Thank goodness everything was fine with that and my platelets count came back up after a few months. Have any of you had similar instances occur? I know that we normally have a lower WBC with PBC anyway, but will be move around that much?
Just trying not to worry and give it to God to handle!!
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lovetocreate
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Hi lovetocreate- I can't speak to all of your problems but I do get that twisting feeling you refer to. I tell my doctor that it feels like a garden hose with a bad kink in it! I've been told that it's likely muscle spasms unrelated to PBC. I get it most often if I'm bending over (such as tying shoes) or twisting my torso in the wrong way. I got it more often when I was pregnant. Mine is extremely uncomfortable but usually goes away in about 10 minutes.
I get that awful pain where I almost pass out and I went to the ER they removed my gallbladder thinking that what was causing such terrible pain only to wake the next day to the same pain I still get it every once in a while
I have had this twisting feeling right under my rib cage on my left side. I have had it several times before and it’s scary, but it has always went away within minutes. This morning was ABSOLUTELY horrible! I did everything from walking around and laying down. I was close to waking up my husband to take me to the hospital. I have never been so scared. I have never mentioned it to my doctor or anyone because I just thought it was gas or something, but this is starting to scare me. It literally feels like ringing a rag from the twisting motion. I do have a family doctor so I think I should mention this to her after last nights episode.
I get the same feeling if I bend deep to tie shoes etc. or if I stretch tall and breathe deep. Have you figured out what it is? I have mentioned to my doctor but she doesn't seen concerned. I explained it as it feels like my fat is rolling over my liver. I don't know what it is but it is painful and I have to relax and then I can feel it unfold. It's weird!
You’re right! It is very painful. I don’t know what it is but it still happens if I move a certain way or something. Almost reminds me of a cramp! But as long as it keeps stopping I’m good!
Oh my goodness. I have PBC and have been having pain under both rib cages for years. I may turn my body or do absolutely nothing and am keeled over in pain. It takes forever for me to get them massaged out. I asked my liver specialist if this happens with PBC and she said no. I am so confused. At times I have had to pull over when I’m driving and get out of the car until I can get them under control. Does this sound anything like what you are experiencing? Thank you, Patricia
Yes I have this on my upper right side as well as where my appendix was. I thought it was my gallbladder for years until they removed it and I still had the pain...it’s like the worst ever rolling Charlie horse! And like a Charlie horse takes a while to relax/unknot. I also double over it’s so painful. I was just recently diagnosed with Myeloma which is why your blood work caught my attention. My white blood cells dropped from 3.8 to .8 in two years time (4 -11 considered normal range). Just curious as to any correlation?
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