New symptoms?

[KatherineM_PBC]

Hi all, I am most grateful 🙏 that for the 10+ years since diagnosis I have not had any symptoms. I often wonder if I was mis-diagnosed but my Consultant has gone over my original notes and biopsy results and say the diagnosis is correct. I take Urso and can only imagine that this has prevented any worsening of my condition which was found by chance after a routine blood test for something else. Aged 55 now I have no fatigue but it's always at the back of my mind when I'm having a down day. A couple of things that have developed over the past few months are an odd sensation on my back, like there are ants crawling on my shoulder blade, and a tingling sensation in my legs in bed some nights. I have never read about those symptoms on this forum so wonder if they are a coincidence or not? Anyone else get this?

[CeeCee101]

although none of us are doctors and you should ALWAYS mention new symptoms to your doctor, couple of possibilities: the shoulder thing could be itching. Itching in PBC is not like a bug bite, it’s from within to without. The leg thing could be restless leg syndrome, people with PBC often have this. But please mention these to your doctor and find out what he/she thinks.

[mel16]

hi

I am so glad to hear that someone else is experiencing this. I used to get this thing like ants at the top of my back and now I get this feeling like bites (with no bite) worse at night

I keep looking in my bed to see if there is anything there. It’s so weird and getting me down

[janetfolley]

Hi Katherine....I've had PBC since 2004 and I'm 74 fit and healthy like you do not really have any symptoms except at night..every night.. Horrendous tingly in my legs and feet, several times over the years I have told my GP about this dreadful sensation but all I get is a not sure explanation..I have not seen my consultant at the hospital for about 13yrs..If anyone can explain why this tingling happens I would love to know.

[physigoer in reply to janetfolley]

Neuropathy is a symptom of PBC. I have tingling and painful shooting pain in top of my feet as well. Dr is sending me for nerve testing next month to confirm its neuropathy as there is meds you can take to help.

[janetfolley in reply to physigoer]

I had the nerve testing at hospital but unfortunately they didn't find anything wrong... I still tingling every night with no answer.

[physigoer in reply to janetfolley]

Thats no good. I am hoping for a diagnosis as I'm worrieds I am losing my ability to walk without pain and they can give me some kind of treatment. Maybe you have fibromyaglia?

[gwillistexas]

I was diagnosed in 2017 by routine labs. I have never had symptoms. Some do and don’t. Just the nature of PBC.

[JanineNZ]

Hi Katherine. I started getting tingling and numbness in my lower legs a few years ago. When I went to the doctor I was referred to a rheumatologist and was diagnosed with fibromyalgia. I have ongoing pain in my neck and shoulders and endless fatigue so it's hard to know what the cause of each symptom is! All the best with your search for an answer.