I am recently diagnosed. AMA positive, ANA negative, family history of Psoriasis and Psoriatic arthritis, father was HLAb27 positive with Ankylosing Spondylitis.
This diagnosis was unexpected as my concerns were about my hands and fingers that now struggle to type and a nerve issue that is causing my leg to go numb with prolonged standing. I had been having a lot of swelling in my feet and ankles and my liver enzymes were elevated.
Due to the family history of autoimmune issues the Dr ordered several tests as well as an ultrasound of the liver. I was diagnosed by an e-consult with gastro who said it was likely PBC & NASH and ordered urso.
The funny thing is now I think back to all the times my hands and fingers would itch like crazy and realize that was actually a symptom.
The pain in my hands/fingers began in mid 2020 when I had developed frozen shoulder syndrome. At first I thought the pain in my hand had to do with the nerves being inflamed from that since it all happened about the same time. I had read that frozen should can happen again in the other shoulder in about 40% of cases and that was the case for me because as the right shoulder was improving the left shoulder went out on me as well.
When my frozen should was well healed I noticed that my hands had not improved, in fact they became more and more uncomfortable.
I also have burning eyes in the mornings, sometimes so bad its difficult to open my eyes, so the Dr ordered tests for Sjogren's Syndrome but those were negative.
Its difficult getting into a specialist out here so my 1st tele med visit with the rheumatologist is in august and appointment to see eye dr is in october.
I feel like I am in limbo, perhaps the telemed can give me some answers but it is my hands and fingers that cause me daily discomfort, I had hoped that maybe I did have SS because at least that would explain the pain, but that was negative.
Can the PBC be causing the pain in my hands and fingers?
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AutumnWind
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I’m new as well with PBC but recently had an appointment with a rheumatologist. Likely you will be ordered x rays to check the joints in your hands for signs of arthritis / as well as much more detailed bloodwork. Keep track of your symptoms with a log and take pictures of joints or areas that are red or inflamed. I used to work for a rheumatologist and sometimes these things take a while to sort symptoms out. Rarely did I see anyone leave the office after a first visit with a diagnosis. It was something that was observed over time.
I do get itchiness in my hands and feet that come and go. I do get numbness in my limbs at times , mostly my arms and hands. I am sore quite often in different joints. Currently waiting for lip biopsy for sjorgrens due to dry eye, mouth.
You explained exactly as I felt, in limbo waiting to see the outcome of all the testing. Hopefully you get more answers about the nerve issues with the leg. Should numbness ever accompany sudden loss of control of bladder or bowel, it is a medical emergency and to go to to the hospital. I hope you get more answers.
I had xray of the hands, honestly I wanted to cry when they said there was no arthritis. There is a nerve in the right hand that is pinched or something as there is constant numbness on the outside of the pointer finger and at times nerve pain with movement, but theres an area on my wrist where I find an area of tightened tissue that I self massage and that seems to help that (used to be a massage therapist before my body went haywire.)
That being said perhaps inflammation itself could be the cause of so many things?
I do know there are studies that are saying that joint and muscle pain are seen with PBC but that doesnt seem to be common on the symptom list on the websites I have read so far.
I registered with Canadian Pbc foundation and was sent info package. In it it did mention joint pain but stated there are conditions some people with Pbc are prone to having but I don’t understand if it’s other diseases that cause the additional symptoms or not.
Maybe a night wrist brace will stabilize the wrist and decrease nerve agitation while waiting to find out the exact cause. Red, heat and swelling mean inflammation and see someone sooner than later.
just FYI I started a centralized thread over at PBC Foundation feed on AI conditions that over lap PBC especially based on people’s experience and diagnosis. If you get a final report from your doc please let me know and I will add it there. Overlap of other AI conditions seems to be common. I read a medical paper that said up to 50% of PBC patients may end up with another overlapping condition. I’m going to try to keep the list updated.
Absolutely. I ending up going on disability because my fingers would just lock up and joints would distort with an intense cramping, even broke a finger at one point. It actually moved through different areas of my body at different times. So yes it possible especially if you're negative on all other fronts. I'd suggest a hepatologist with pbc knowledge if you can find one.
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Anyone with PBC tried the carnivore diet?
Newly diagnosed with PBC
