Delayed dx of pbc

[KevinHall10_]

Around 2000 i flund out i had guerd , hiatus hernia, and acid reflux. I started getting tired way back then. Do you all think i had pbc even then? Always sick going from dr. To dr. Was dx in 2011. Am in stage 2.

[Michiganpbc]

Could be you never know right, the symptoms you mention such as gerd and fatigue i see on here are common in PBC patients. I have those symptoms too, i am stage 2 PBC.

[KevinHall10_ in reply to Michiganpbc]

How do we know when we have progressed? My liver blood tests are just okay, but that doesnt mean anything. Should i get another mri? Have u heard of a MRCP

[Michiganpbc in reply to KevinHall10_]

They do a liver scan here again its been 2 years since i last had one, the labs are checked and if any doubt or severe changes another liver biopsy. Every place is different from what i read here.

[KevinHall10_ in reply to Michiganpbc]

Thank you

[Michiganpbc in reply to KevinHall10_]

Anytime, how are you doing today? I have bad liver area pain bone pain....

[KevinHall10_ in reply to Michiganpbc]

I alway bone pain. My legs ,ankles and hand and wrists. I have 3 dics in my back that arent right. My back has been really hurting for 3 days, which i think make my groin area really hurt. Im going to call my dr.on monday. Thanks for aski g, sorry no goo news here this time.

[Michiganpbc in reply to KevinHall10_]

Have you had a bone scan yet? Thats how i found out i have osteopenia my liver doctor sent me because its common in PBC. I broke my foot bones last year never had accident or fell just broke from walking ! Now i am careful when i walk not to trip or fall knowing my bones can fracture easy now.....

[KevinHall10_ in reply to Michiganpbc]

No, but i will sugest this thanks. I have fibro, so i just thought it was that. I have good and bad days, u know how that is. I enjoy the good ones.

[Michiganpbc in reply to KevinHall10_]

Yes exactly i learned to realy enjoy my life more now so when i have a rough day i get over it mentally much quicker it changed my whole mind set this disease.

[KevinHall10_ in reply to Michiganpbc]

Yep, keep in touch.

[Ballymahon2]

Its hard to know i am only recently diagnosed my lfts started to elevate in 2013 have no symptoms on urso

Its hard to know when pbc starts

[butterflyEi]

Hi KevinHall10_

It is hard to know when the PBC goes active, for myself I presented with symptoms to my GP around 1996 but did not get a diagnosis until 2006 and that was by chance when bloods were done for another reason.

best wishes

[KevinHall10_ in reply to butterflyEi]

That is 10 years u didn't know. When thar happens, do you count the years u have actually had this?

[butterflyEi in reply to KevinHall10_]

I do not know really, I guess one can only be sure from diagnosis but from my body I know it was longer.

[KevinHall10_]

So, what stage did u get dx. at? What kind of symptons do u have in 1996? I csn remember being always tiried at an early age.

[butterflyEi in reply to KevinHall10_]

I had severe itching in 1996 which I put up with for ages and then it suddenly went. I have never been staged it is not something that seems to happen in the UK.