anyone with any info plz

i went to a different dr mine wasnt there and i figured it was ok coz i only wanted answers to some questions i had she made me feel so disrespected ill never c her again but she did ask me if my chest was caved in has anyone ever heard of that happening with pbc or liver disease i have both no symptoms early stages im asuming and my numbers r good

[emerich]

Hi Christine00450

I don't think a caved in chest would have any connection at all with pbc. Not quite sure what you mean by pbc and liver disease? Pbc is a liver disease. Have you been diagnosed with something else liver related, apart from pbc? Your gp would be able to give you your numbers as he/she must have used them to diagnose you. Sorry you had a bad experience with this gp, maybe you could see your regular gp to discuss it more.

Best wishes

[Hidden in reply to emerich]

i have pbc and cirrhosis and i will only c my gp now or call him if i have any question

[Hidden in reply to Hidden]

Okay, you say in your initial post that you have both PBC and cirrhosis, and again you say it here - until a couple of years ago PBC was known as Primary Biliary Cirrhosis (it is now called Primary Biliary Cholangitis) - could this be what your doctor was referring to?

In your initial post you also said you were considered to be in the early stages due to the lack of symptoms (if I have understood you correctly), if you have cirrhosis you can not be still in the early stages you would be classed as being in Stage 4. Just a 'heads up' symptoms. or lack of, do not correlate with the stages of PBC.

pbcers.org/about-pbc/stages/

[Hidden in reply to Hidden]

ok so if im in stage 4 why the lack of symp sorry im just confused

[Hidden in reply to Hidden]

I'm not actually saying you are in Stage 4 (I'm not your doctor so can't say one way or the other) - I'm just pointing out that, according to all the research articles I have read, if you have cirrhosis then you are classed as being in Stage 4.

Here is a quote from a Q&A doctor's panel concerning symptoms and stages of PBC - note the last paragraph:

"Melissa Palmer, M.D.

Specialty: Gastroenterology and Hepatology

Private Practice Long Island, NY

01/25/04

Question

I would like to know what you measure and what the measurements are to identify that you have reached stage 4 of PBC.

How it is possible for a person to have Stage 3-4 via biopsy and yet have normal labs and no symptoms. Why is a biopsy “not the ideal test to begin with”? I know there are at least a few of us with this situation. I wonder if those of us in this situation are on the edge of a cliff and one morning we’ll wake up itching, depressed and in the beginning stages of liver failure.

Answer

PBC may be diagnosed by a combination of the symptoms that a person is experiencing, the physical findings detected on an exam, the results of blood work, the findings of a liver biopsy, and the results from imaging studies.

As opposed to other liver disorders, PBC has been neatly classified into four distinct stages that can only be determined by a liver biopsy.

Stage 1 is characterized by the finding of damaged bile ducts. Granulomas-nodules filled with a variety of inflammatory cells-are often detected in this stage.

Stage 2 is characterized by the finding of a proliferation of small bile ducts known as bile ductules.

Stage 3 is characterized by fibrosis, and stage 4 is characterized by cirrhosis.

Occasionally, a single specimen from a liver biopsy may show evidence of more than one stage of the disease. In such cases, the most advanced stage present should be considered the correct stage. People may progress through the different stages at varied, and largely unpredictable, rates. For example, a person may stay in stage 1 for many years, and then rapidly progress from stage 2 to stage 3. Or a person may rapidly progress through stage 1 and then stay in stage 2 for many years.

There is a wide spectrum of symptoms associated with PBC. At one end of the spectrum, a person with PBC can be asymptomatic (have no symptoms). These people are typically found to have PBC during evaluation of elevated AP and GGTP levels found on blood tests. However, some asymptomatic people with PBC have normal levels of AP and GGTP. In these instances, a positive antimitochondrial antibody (AMA) is the sole indication that the disease is present. Up to 60 percent of people discovered to have PBC have no symptoms. Diagnosis in such people has become more common due to routine blood tests which are performed during the course of a regular check-up. Note, however, that most people who are initially asymptomatic eventually do develop symptoms. This occurs in about three to four years from the time of initial diagnosis. However, symptoms can take as long as ten years to manifest. Interestingly, even in advanced stages of PBC, some people will still have no symptoms."

cited at: pbcers.org/support/doctors-...

[Hidden in reply to Hidden]

thank u that was informative i have a better understanding now

[Hidden in reply to Hidden]

i havent had a liver biopsy i did have endoscopy and no signs of varies

[Hidden in reply to Hidden]

I had a biopsy, 28 years ago, when first diagnosed, then a second one 5 years later (to assess the rate of progression - if any). Once PBC was established I did not have another biopsy. I am now in Stage 4 and only have ultrasounds and fibroscans done to keep track of liver condition. I also have annual endoscopes, the last one indicated I needed my varicies banded - not looking forward to that at all.

[Wilmahair in reply to Hidden]

Let me know how you go Dianne.

[Hidden in reply to Wilmahair]

I will Wilma. I see my new Hep. doctor on Monday so I'll find out then what he intends to do about my varicies.

How are you keeping?

Di

[Wilmahair in reply to Hidden]

Bit better Dianne but having pain in my right side. Also Dr is checking out my heart. Thinks that may be why I feel feint when I bend over. Also been getting niggly pains in chest on the right side also. Have stress test in Dubbo on the 11th of April and echocardiograph. Then see the heart specialist. Also have to wear a heart monitor for 24 hours.

family matters have settled somewhat too thank goodness as I don't cope well with other people's anger any more.

Have shown my husband the varices information you sent me so I feel more confident he knows what might happen and what to tell the emergency people who will have to attend to me if it happens.

Thanks for your help

wilma

[Hidden in reply to Wilmahair]

Well, aren't we the 'bobbsey twins' then - I'm having the echo cardiograph and halter monitor stuff done this week. Not expecting any issues to be revealed though, I have these tests periodically and they always come back 'negative' to anything.

I'm happy that things have settled down at home for you.

I'm also glad you gave your husband the information - let's face it, where you live you need to have plans in place for such emergencies.

Take care,

Di

[Wilmahair in reply to Hidden]

Oh lol Di.

That is funny. Good luck with yours. No more heart attacks for you allowed.

Wilma

[Hidden in reply to Hidden]

sorry ive heard thats uncomfortable

[Hidden in reply to Hidden]

(grin) that's why I'm not looking forward to the banding.

My cousin, who also has PBC, had quite a few varicies banded (before she had her transplant) told me all about the recovery period - got to love cousins, right? lol. Seriously though, Lynda (my cousin) did say that she had a sore throat for a couple of weeks, so I'm at least expecting some discomfort. :- (

[Hidden]

Never heard of the chest caving in, can't really see how it would. Maybe her terminology of caved in chest was not quite right, I would go back and see your regular GP and let them know how she made you feel.

[Hidden in reply to Hidden]

i did and i guess im not the only one