Peripheral Neuropathy

[suzycatt1]

I was diagnosed with PBC around 6 years ago. Due to the current Covid -19 situation here in the UK I haven't had any contact my Gastroenterologist for almost 2 years. I understand, one of the symptoms associated with PBC is Peripheral Neuropathy. I have this condition in both feet, numbness, burning sensation and one or two symptoms, I also feel thatPN is affecting my hands. Does anyone else experience Peripheral Neuropathy?

[iagra]

I haven't been formally diagnosed with it, but, I do have similar sensations in my toes now and then. Haven't noticed the same in my hands so far.

[LissiC]

Yes, my right leg and left arm

[butterflyEi]

Yes I have tingling in hands and feet, the sensation improved after starting b12 injections following a diagnosis of Pernicious Anaemia which is another autoimmune condition. Your GP may be able to help with blood tests to rule PA out and talk about this sensation. When I first presented to the GP I was given a prescription to help with symptoms.

[cazer]

I've had a lot of pins and needles, and cramp.. It was discovered luckily that I'm low in magnesium and have been started on supplements..It has greatly improved and so I would suggest asking for that to be checked..

I was told that the omeperazole I'm also can lower magnesium..

Best wishes cazer

[Lu11]

I get burning heels at night and same sensation on my scalp!

[Stub007]

I have stage 3 PBC and am nearly 83. While I have not been diagnosed with neuropathy and don’t have your exact symptoms, I do have cold feet most of the time, regardless of the season or temp, even though I do at least 30 minutes of cardio six days a week. Don

[Nellies47]

Hi.Yes I do. I have those symptoms for a few yrs now. Lower legs and arms and hands and feet. Also arthralgia. I see a rheumatologist and I'm been investigated for serum neg sjorgrens, had biopsy and waiting results.

Had nerve conduction studies and they are negative for large nurse neuropathy, possibly small nerve neuropathy as per rheumatologist.

It can be very uncomfortable. I also have restless legs too.

Hope you get answers.

Nelly

[NFTom]

My feet have been a little numb for a while now, Mostly I notice it when in bed.

[st-Jude]

I have not read that peripheral neuropathy is a symptom associated with PBC.

[Nellies47]

Hi.Yes, I have numbness and coldness and burning pain in my lower limbs and hands and feet. It started about 2 yrs ago in feet fthen legs nlegs then hands now arms too. It's not there all the time.

I also have restless legs which I've been told is separate.

I had nerve conduction studies that are normal. My rheumatologist feels it could be small nerve PN.

Hope this helps.

Nelly

[LindaVillanova]

I have trigeminal neuropathy (face) and nuero doc prescribed Gabapentin and to take B2, and Magnesium. Its been 2.5 years -assume it never goes away at this point. sigh

[islandanonymous]

I've never heard of this connection before. I was diagnosed with PBC in 2013 and the reason I was eventually diagnosed was because I kept seeing a GP and two neurologists to figure out why I was getting constant tingling/jumping nerves in my lower legs and feet, so I also had my blood tested a few times. I was told it was probably benign fasciculation syndrome but now I wonder...

[JanineNZ]

Hi. I noticed the same symptoms a few years ago. I read up about it on google and self diagnosed MS. My GP sent me to a rheumatologist who decided it was fibromyalgia. Another autoimmune condition that often goes hand in hand with pbc. There isn't really any treatment for it. Sometimes I notice the tingling and numbness more than others but I don't think it's gotten any worse overall.

[MazJay]

Yes I do. I was being investigated for long covid so assumed it was a symptom of that. Hmm I wonder. When I eventually see a consultant I'll ask

[Sharonis]

So interesting. I am 63, was diagnosed with PBC 5 years ago, and am pre-diabetic. For the last 6-9 months, after itching on the soles of my feet became well-controlled by rifampin, I've experienced burning and tenderness, especially on the balls of my feet and under the toes. Metatarsalgia? The rheumatologist fears PN. Insurance requires referral by my primary care physician to a neurologist, but I suppose I will pursue. In addition to PBC, I have CREST (limited sclerodema), hypothyroidism (Hashimoto's), fibromyalgia, and a TAA. Arnicare gel combined with extra moisturizing lotion often calms the symptoms.

[Andreaes25]

Hi yes, both my mum and I get burning sensations and both have PBC. Prescribed Gabapentin.