PBC pins & needles

[Hastingsgal]

hi everyone,

I have the pins and needles in my hands and feet as well, as quite a few other people on here. Is that associated with Pbc?

I also have Elevated cholesterol but lead a very healthy life. Do not drink (used to when I had very low cholesterol ha!) eat very well. Is high cholesterol associated with PBC?

I was diagnosed in 2018 with “pre-PBC”. No one has followed me up since!!

Regards

Amy

[butterflyEi]

Best to go back to your doctor and ask for a follow up. We have to be proactive these days with the NHS.

take a look at:

pbcfoundation.org.uk/living...

The pins and needles feeling for me turned out to be another auto immune condition. Worth asking your GP.

[Artsy123 in reply to butterflyEi]

Hi, may I ask which auto immune was the pins and needles related to?

I agree about the PBC foundation for info and seeing a doctor.

[Hastingsgal in reply to Artsy123]

I have no idea what it is. Been waiting over a year for neuro conduction tests. It can get really bad. But today I was told I have calcinosis on my lumbar spine which is rare. Only just told this an hour ago so have no idea what it means except very painful. I have it all throughout my body. Maybe that has something to do with it nerves being pinched/compressed ? They suspect I have Scleroderma which combines all these symptoms & diagnosis. Final tests for that this week. Has taken years!!

I feel so terribly alone with all this. I’m a super strong person but it’s getting ti be too much.

[Artsy123 in reply to Hastingsgal]

That is a long time to have to deal with bits and pieces and no concrete answers as well as scary. For different reasons I can relate. I hope you feel supported by your team, loved ones and this feed.

[butterflyEi in reply to Artsy123]

Pernicious Anaemia was diagnosed and once I had been on treatment for a while there was an improvement in the pins and needles.

[CeeCee101]

I think this may be common to Sjogren’s? If possible, get tests from a rheumatologist for other autoimmune diseases. I started a thread on here this year for people self-reporting other AI diseases they have in addition to PBC.

[Hastingsgal in reply to CeeCee101]

yes was tested extensively fir this but it was not definitive. I do have sicca (dry mouth, eyes, everything) but the biopsy was negative. That was many years ago. I’m getting really frustrated with health. I have so many problems. I was high diving off 50 ft waterfalls in Columbia & Costa Rica in 2018. :-(. I feel a slave to my health a lot of the time.

[Skypony]

Hi Amy, as others have said pins and needles can be a separate (though for me, unnamed) autoimmune condition sometimes triggered by a virus, which was my diagnosis when I had a conduction study. My p & n comes and goes over periods of months, and varies in intensity.

So difficult to adjust to reduced circumstances isn’t it. Very sorry you’ve had a lot to contend with, and hope there are better things ahead. Meanwhile, your mental well-being matters, don’t be slow to look for support with that if you need it. I’m sure many of us have at some point.

[Hastingsgal in reply to Skypony]

Thank you. Yes my mental health is suffering because of it all. I just had the capillary testing Scleroderma which was negative but the “bucket test” putting hands in bucket then taking them out and watching how quickly (slowly in my case) they warm back up again under a thermography, was positive which demonstrates vasculitis & supports Raynaud’s. So this can cause pins and needles. It’s all a mine field! 😊 I’m quite bored with it all but have to keep on top of things as GP certainly doesn’t (Uk NHS so overstretched right now)