I'd thought for a week that the very unpleasant new 'prickling' sensation that I'd developed was PBC itch, but now believe after visit to GP that it's probably peripheral neuropathy. Been diagnosed with PBC 14 yrs and only ever had mild-moderate skin irritation. Weird thing is, this pins & needles thing in both of my hands and feet was very itchy at first, definitely made me think PBC, but now is purely and distinctly a nerve tingle. GP also found reduced reflexes typical of neuropathy.
I'll have a nerve conductivity test done soon (paying for it myself as NHS would take ages) and maybe find out - but not definitely! In the meantime, any experience or suggestions please guys?
Many thanks.
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Skypony
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I was diagnosed in 2006. In 2014 my itch went out of control and it took until just recently for various medications to be tried to find the right cocktail. Amongst the various visits to the GP I had blood test for B12 deficiency which turned out to be Pernicious Anaemia so I settled in to regular B12 injections but the discomfort in my feet did not improve so eventually I asked the GP again and had a blood draw for sugar levels which came back about 4.2 so I was not diabetic. Time passing on and self injecting with B12 more regularly than can be obtained on the NHS I decided to check again and found the doctor was a locum. He checked the pulse in my feet and pronounced neurological disorder and prescribed gabapentine. Needless to say with the GP time constraints I came home to check neurological disorder and having scared myself witless settled on peripheral neuropathy as the sensible answer. I have been on gabapentine for about two weeks and the discomfort in my feet has improved but it is still early days whilst I settle on to the medication although I am a bit worried by it as I now seem to bruise more easily and that is a possible negative side effect explained on the "PIL". My next appointment with the GP is October.
I have not been offered a nerve conductivity test and did not know until your post that there is such a thing.
After having had no specialist care from 2009 to 2014 and the retiring GP in 2014 when I asked to be referred to a specialist unit again saying "people like you should have regular specialist care" I have been on a learning curve. Not everything is PBC although I believe many of the unpleasant sensations in my body I put down to PBC but I am learning to change that.
There is an article on pins and needles on the NHS Choices web site but the wide range of causes can take you off on a tangent if like me you read too much into the condition.
I would very much appreciate learning more of the conductivity test when you have it done.
just thought I would add my experience with peripheral neuropathy, I have been having nerve problems in my hands and right leg for a number of years and unfortunately have never really had an answer, I have had the nerve conduction study done several times and still don't have an answer, I was given a diagnosis of "patchy asymmetrical large fibre sensory neuropathy of unknown cause" , basically they have told me that they can tell the nerves are no longer working but they dont follow a pattern so they don't know the cause, I did see a specialist who was very interested in exploring the possibility of a link between pbc and nerve damage but she then went on sabbatical and I haven't seen her since, but I do have an appointment today to see her so I'm hoping she is back , I will let you know how it goes today and if I get any answers, always hopeful 🌈🌝
Thank you so much for taking the time to respond. Sorry to hear about your troubles. I hope we will all know a little more soon after your appt. and my test, and the idea of a PBC connection is definitely worth exploring further.
Thank you so much for your very comprehensive answer. I'm sorry of course that you've had to experience this, but with more shared information and experiences maybe we can all feel more supported with it, at least.
I'll report back after the test, but far as I know, it can rule in or out large fibre nerve issues without adding much if the condition affects small fibres.
Hi Sachin1234, sorry to hear of your hand and feet problem. I wonder if anyone has considered Raynaud's syndrome for your symptoms - is it worse with changes of temperature, especially cold?
I occasionally get the prickling sensation - not sure I can specify where- and had assumed it was precursor to the itch - which I have never had. Mentioned to Hep Dr but no discussion came from it.
Hi LindaVillanova, thanks for responding - maybe yours could be a PBC thing, my tingling is constant at the moment. Or could be occasional pressure on a nerve?
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