rdrnrgal
09-24-2003, 11:54 PM
This is my first visit to the board. Anyone been diagnosed with PBC?
Sponsor
cleopatra`
01-22-2005, 07:08 PM
Yes I've been diagnosed with PBC and so was my sister.
rdrnrgal
01-24-2005, 04:13 PM
Cleopatra,
Have you visited the PBCers.org web site?
Have you visited the PBCers.org web site?
cleopatra`
01-27-2005, 12:43 PM
Cleopatra,
Have you visited the PBCers.org web site?
yes its an excellent site! I also found a web site that has two video's on PBC that you can watch online.
http://www.axcan.com/pbc_videos.php?lang=1
you just click on the title and it will download. You don't have to purchase them but you can if you want.
Have you visited the PBCers.org web site?
yes its an excellent site! I also found a web site that has two video's on PBC that you can watch online.
http://www.axcan.com/pbc_videos.php?lang=1
you just click on the title and it will download. You don't have to purchase them but you can if you want.
suzyshop1
02-17-2005, 04:25 AM
Cleopatra could you be so kind as to tell me what symptoms you were experiencing when you were diagnosed with pbc?Also what tests did your doc run to diagnose you with pbc?Is pbc a termimal disease or can it be controlled thru meds.Any info will be greatley appreciated.Take care.
cleopatra`
02-18-2005, 05:54 PM
Cleopatra could you be so kind as to tell me what symptoms you were experiencing when you were diagnosed with pbc?Also what tests did your doc run to diagnose you with pbc?Is pbc a termimal disease or can it be controlled thru meds.Any info will be greatley appreciated.Take care.
well suzy I had a lot of things going on at the same time, I also have chiari's which wasn't diagnosed at that time either. So my doctor was desperately trying to find out what was wrong, my liver enzymes at that time weren't elevated, they were thinking things like lupus, ms etc when they did an ANA test it came back negative, but something showed up some kind of staining and they suggested he do an AMA test and a couple other tests the others were negative but the AMA was positive.
I had been extremely tired and weak, just wanted to sleep, pain in the right rib cage area, nausea. Those are what we believe were from my liver, but I had a ton of other symptoms we believe are from the chiari's. but some are hard to differentiate.
PBC from what i've learned can be a very slow progression for some people and they die of old age not the pbc, or for others it progresses much quicker. they have urso to try and slow it down, some eventually need a liver transplant. I was to the doctor today and my enzymes are up so I have to go back to the gastro man, my creatinine kinase is low funny aye I haven't a clue what that means and didn't think to ask my family doctor but I will ask the gastro man when I see him hahahha.
I hope that helps.
cleo
well suzy I had a lot of things going on at the same time, I also have chiari's which wasn't diagnosed at that time either. So my doctor was desperately trying to find out what was wrong, my liver enzymes at that time weren't elevated, they were thinking things like lupus, ms etc when they did an ANA test it came back negative, but something showed up some kind of staining and they suggested he do an AMA test and a couple other tests the others were negative but the AMA was positive.
I had been extremely tired and weak, just wanted to sleep, pain in the right rib cage area, nausea. Those are what we believe were from my liver, but I had a ton of other symptoms we believe are from the chiari's. but some are hard to differentiate.
PBC from what i've learned can be a very slow progression for some people and they die of old age not the pbc, or for others it progresses much quicker. they have urso to try and slow it down, some eventually need a liver transplant. I was to the doctor today and my enzymes are up so I have to go back to the gastro man, my creatinine kinase is low funny aye I haven't a clue what that means and didn't think to ask my family doctor but I will ask the gastro man when I see him hahahha.
I hope that helps.
cleo
suzyshop1
02-22-2005, 05:43 AM
Thanks cleo for replying to my post.Ive had numerous blood tests done all coming back negative,except for an ANA test.Ive tested positive a couple times.The only symptoms i have are the pain in the side, tiredness from the pain keeping me up all hrs of the night.The doctors are stumped im on my 5th specialist.Been to a rhuematologist twice because they thought it could be a connective tissue disease.Only problem is im not showing any of the classic symptoms for a connective tissue disease.Ive had this pain for bout 18 months now.Just had a ct abdominal pelvic scan ,read somewhere there supposed to be good at picking up problems in the organs.This not knowing is driving me crazy. Im having more blood tests done this wk.I"ll ask my doc if i ever had an AMA test done because im not sure if i have .But i think i had a series of blood tests run that involved the ANA and AMA but i only tested positive for the ANA.Im really sorry to hear about your problem,i will pray that it progresses very slowly without undue pain.Please keep in touch i would like to know how your getting on.Take care.
cleopatra`
02-23-2005, 08:41 AM
good luck suzy, I hope you get some answers soon, I swear not knowing is worse than knowing even if it is something unpleasant.
Good luck and keep us posted.
cleo :wave:
Good luck and keep us posted.
cleo :wave:
suzyshop1
02-23-2005, 09:59 PM
Will do Cleo ,you do the same.Take care.
OhioMOM
03-02-2005, 04:49 AM
PBC is an autoimmune liver disease. The autoimmune system thinks there is something with the small bile ducts and trys to destroy itself. This disease is progressive. The disorder can be slowed down using ursodyoxycholic acid. Symptoms include fuzzy brain, itching, fatigue, buddah belly. Some people experience no symptoms at all. 90% of people who have this disease are female. This disease is not related to behavior. It is believed to have some genetic link and research is ongoing.