Peripheral Neuropathy in PBC

[Michiganpbc]

I have PBC stage 2 just diagnosed with PN started with numb tingling painful toes feet legs fingers hands. Curious if anyone else here has these symptoms?

[Skypony]

Hi Michiganpbc, yes I have PN and I know from a previous post that some others on this forum do. I don’t think there’s a direct connection with PBC, but some cases (almost certainly mine) have an autoimmune cause and so that may be the common link. How are you managing the symptoms?

Best wishes.

[Michiganpbc in reply to Skypony]

I am seeing a neurologist she is ruling out other diseases as PN can be from some serious diseases, i am praying i dont have those, i just had EMG its a test for nerves in my legs it came back positive for PN so i have to wait and hear back from the a Neurologist she returns from vacation next week. I did some reading on PN and yes autoimmune is mentioned a few times so i would be happy with that diagnosis versus the more serious ones. I am on flexeral its a muscle relaxer it does help i take it before bed it helps me sleep through the night where as prior to taking it i was up all night with terrible muscle spasms in my thighs and shooting pains in my arms and legs. I have no reflexes in my ankles which is a common sign of PN, my arthritis doctor found that on exam for osteoarthritis. I was tested for all the hormones thyroid low vitamins mine are all normal range so i dont take any replacement vitamins, though, i was hoping that was the problem that would be less worrisome and easier to treat and cure right! I did come across some research articles which i didnt save, stating some research showing a connection to PBC, so maybe its the cause and we just need to be treated for the symptoms and watch for progression. I know that once you have one autoimmune disease you are most likely to be diagnosed with others. Thanks for replying now i dont feel alone here! I will keep you all updated here on my journey with this and what the neurologist final diagnosis is, she did say if its not from any underlying diseases, her final diagnosis will be Ideopathic Peripheral Neuropathy which just means they dont find a disease that is causing it, so the cause is unknown or not found Ideopathic.

[butterflyEi]

Yes I do and I agree with Skypony . I was also diagnosed with pernicious anaemia and have found managing that with B12 injections my symptoms of PN improved.

Would be interested also how you manage your symptoms.

[Michiganpbc in reply to butterflyEi]

You are lucky to have found the underlying cause, i take a muscle relaxer called flexeril it has helped lots especially with getting restful sleep. Are you any better or the same since your started?

[butterflyEi in reply to Michiganpbc]

Unfortunately it seems to fluctuate certainly though the peripheral neuropathy is much worse when I am near the B12 injection.

Glad you have something to help you sleep, it is so important to get rest.

Best wishes

[Michiganpbc in reply to butterflyEi]

Yes I understand that, have a good day it’s too cold here to go out 15 degrees ❄️

[Itsmecork]

I do! But I have never made the connection to PBC. I am just living with it - but have not found anything that helps. Would like to stay in the discussion.

[Michiganpbc in reply to Itsmecork]

How bad is your neuropathy? Mine kept me up all night terrible pains spasms shocking sensations

[Itsmecork in reply to Michiganpbc]

Have you tried Gabapentin?

[Michiganpbc in reply to Itsmecork]

Yes I had a terrible adverse reaction to it can’t take that anymore I seem to be hypersensitive to medication maybe related to liver/pbc and neuropathies

[LorraineLouise]

Hi

I too have PN, thyroid disease, and PBC. The Gabapentin helped the PN, but I had awful side affects from it. So i stopped taking it. Please keep us posted as to how they treat it. I would be very interested.

I wish you well!

Lorraine Louise

[Michiganpbc in reply to LorraineLouise]

Same here tried gabapentin class of meds cant take them, flexeril helps i take it at night helps with pain spasms and sleep, I will post my updates as I get them, thanks everyone for the replies!

[Lizzy1313]

Me, too. I was diagnosed with PN last year after almost 10 years of very painful episodes. I've had fewer flare ups recently. Taking Alpha Lipoic Acid based on recc fron neurologist and my naturopath says it's good for liver too. I also feel my underlying EBV infection is the trigger for this as well as other autoimmune reactions. I'm taking monolairen and l-lyseine for that and it may be helping. I'm so sad to hear that you're going through this. It's horrible, for sure!

[Michiganpbc in reply to Lizzy1313]

Thanks, i just hope its not due to one of the more serious diseases so I am glad I am being worked up by a reputable kind Neurologist ....

[LindaVillanova]

Wow this is interesting as I was diagnosed with trigeminal neuralgia (face/jaw) and take gabapentin which works for me. My liver doc said she had not heard of any connection but your posts make me wonder. Pain was so bad I was given morphine via iv before meds kicked. Thanks for sharing!

[Michiganpbc in reply to LindaVillanova]

Wow, it seems to be common in PBC according to all of us! We should have our doctors make a note of it right! Glad you have something that helps you.

[gwillistexas in reply to LindaVillanova]

My comment has nothing to do with pbc but my dad had that trigeminal neuralgia. To see a grown man in tears over the pain was hard to watch. They told him the only way to relieve it was to go in a clip a nerve. That took care of it. I pray yours doesn’t get that bad. Prayers

[Michiganpbc in reply to gwillistexas]

Wow glad he is better did that leave any side effects?

[gwillistexas in reply to Michiganpbc]

He passed away in 2010 but yes it solved the problem 😊

[LindaVillanova in reply to gwillistexas]

Wow that is heartbreaking. I guess drugs these days work.

[gwillistexas in reply to LindaVillanova]

They thought it was sinus problem so he had sinus surgery. They finally figured it out. They had to go in the back of his skull to clip nerve. But it was worth it. I pray your drugs will help you avoid that surgery 🙏🏻😊

[LindaVillanova in reply to gwillistexas]

Omg I’m staying on the drugs!!

[gwillistexas in reply to LindaVillanova]

Yes! I don’t think they had the drugs when he had his problem. I’ll bet you’ll be just fine 😉

[Chrisprio]

Hi Michiganpbc,

I’m was really interested to read your post. I haven’t seen my GP or had a diagnosis but a few years ago I experienced tingling in my hands and fingers during, and following, a rather busy and stressful Christmas period when I’d completely overindulged in every high sugar, high fat food treat available for the couple of weeks of the holiday period. I didn’t know what the tingling was but as my eating returned to normal after the New Year and life calmed down, the tingling went away so I forgot about it.

Then this last summer I was similarly tempted by, and over ate, a particular new ice cream that I adored and the tingling came back. (I’ll also say that using food as a self soothing balm has a long history for me, having been bulimic in my youth and “comfort eating” for life’s stresses sporadically throughout my adulthood). The tingling retuning scared me and I immediately stopped eating the ice cream and also changed my diet to pretty much cut out sugar, and by default, I’ve reduced my fat intake because the two often go together. I was so relieved that tingling had stopped again. In general I have a really good diet, I’m an ok weight, I exercise and overall I manage my stresses really well now but I had wondered if, over the years, I’m now nearly 60, I may have caused my system to somehow be over sensitised to fats and sugars.

Your post, Michiganpbc, and others above, give me the possibility of my symptoms having being linked to PBC, or to other autoimmune/inflammatory propensities. I’m seeing my consultant next week and I’ll bring it up with them. Had you not written your post I would’ve ever have considered it, so thank you.

[Michiganpbc in reply to Chrisprio]

That’s interesting, i am very healthy not overindulged with food not overweight and exercise most days do yoga classes twice a week, i am starting to see a pattern here right PN in us PBC people!

[anoush]

I have it in my legs and feet it's awful. I too have PBC but mines from chemo 5 years ago

[My-life]

I have never been tested. My feet and hands. Get so cold and the pain in them until they warm up is terrible. Sorry. Glad your getting help.

[Katienharley]

When I was diagnosed with PBC I was also diagnosed with Raynaud’s. If I got cold the blood would stop flowing to a couple of my fingers which would result in my fingers turning white and tingling. I never knew there was such a name for this sort of thing I had always just assumed I had low blood pressure and the cold affected me differently than others. It’s now recently started in one of my toes.

Check it out online. There’s not much you can do with this autoimmune disease but it’s nice if you can put a label on something I suppose and learn your triggers.