PBC Foundation
6,741 members5,812 posts

AMA

I have a gastroenterolist saying PBC and a hepatologist saying not PBC ,but maybe another AI. My AMA is 75.2. I have a lot of the symptoms of PBC. Also , hepatologist told me the liver doesn't have pain? Any suggestions on what to do next would be appreciated.

28 Replies
oldestnewest

There is a sac around the liver that causes pain. Everyone of us in this group that has pain on the right upper side are not happy with the doctors claiming liver doesn't hurt. Well we get pain there. Whether it's the sac or the liver we hurt. Someone else can chime in with the positive AMA result but you can join the liver foundation at the top of the page. They answer questions as well

Reply

Thank you. I was really wondering what was going on after the hepatologist told me that it wasn't my liver. Good to know.

Reply

I've just come back with them saying it might not be PBC ama is high & I too have lots of other symptoms, they're thinking it might be other AI stuff going on, I'm still on urso, & playing a waiting game don't know how long they're going to make me wait. ? Their reasoning is that my bloods aren't showing any signs of progression after 4 years I'm now in a total state of confusion. X

1 like
Reply

They aren't​ giving me Urso. Just doing bloodwork every six months. Why did they put you on Urso?

Reply

I've been on urso for 4 years. Then bloods were up & down they're still up & down I had & still do have lots of symptoms off the list including itching, I can't eat fat or drink alcohol it makes me sleep whilst all's digested takes days Knocks me for 6. But I've developed 5 other autoimmune things since & waiting for genetic testing for a really complicated one, so they're rethinking everything. I'm just really confused.

1 like
Reply

AMA M2 is the blood test for pbc

Mine was .8

Reply

They never tell me scores here, just that AMA is High & I show positive for ANA. Liver tests are said to be higher than a normal person but in the ok range for PBC. & Now they're having second thoughts. See my confusion? X

Reply

Teadybear7 did you make any diet changes by any chance. My blood shows that I am weak positive for AMA M2 and my first smooth muscle ab titre was a weak positive as well. Two months later my AMA M2 was a much weaker positive .8 and smooth muscle is 640. Well my biopsy showed that I am early stage Pbc with early fibrosis stage 1, but no Aih was going. My alt was in the 723 range while Pbc bloods was under control.

I do not trust my biopsy being that I was treated so awful and made fun of quite a bit from both of the techs

I really wish that I could say that this is the first time that I seen adults behave badly but really, it's not. I found out that my enzymes was elevated very early because a lesion was found on my kidney turned out to be nothing but I also have fibroid tumors and my gyn and urologist was ordering lots of blood work and imaging. We literally caught my enzymes elevating from a low elevation to mid 500s. That's when I was immediately put on Urso then prednisone. My biopsy is worthless as far as I'm concerned. But I can't get any of my doctors to order me a second one with a new lab. My liver doctor said that my treatment would be the same regardless I had aih or not being that it didn't show up.

1 like
Reply

Hi I gave up alchol, low fat healthy diet too, controlled sugar/ carbs intake with a diabetic nurse ( I'm not diabetic) I've given up work with the fatigue, so 4 years down the line to have my Gastro think about changing his mind is a bit hard to deal with in my head. Cause if the decide it isn't PBC then what is it??

1 like
Reply

There is a very tight protocol here in the US for diagnosing PBC, first and most important is to see a hepatologist they are trained in liver diseases Gastro doctors get a little training but it's not their specialty I was told here. Next they order liver blood tests and other non liver blood tests , there are many , AMA being the most important for diagnosing as this is positive in almost all PBC patients .

Next a fibroscan and liver biopsy then when all these tests results are looked at they follow the standard procedure/protocol here for the diagnosis I am a patient at the University Of Michigan transplant clinic and this is their protocol.

2 likes
Reply

Thank you for the info. My biopsy was done 14 months ago and my symptoms have gotten a lot worse. Never had a fibroscan. Are you on Urso?

1 like
Reply

Yes I am , as soon as all the results came back they started me on URSO I am responding my labs are all in the normal range now thank GOD right.....

1 like
Reply

I didn't have a fibroscan. But in all honesty I'm ready to give up and not fight to stay alive but just fight to live and have a life. There's so much that I haven't done and so many places right here in the USA 🇺🇸 that I haven't been too.

1 like
Reply

I am starting to feel like that too. I know treatment can give a longer life if started early enough so I keep plugging away to get a resolution from the Drs. , but I am starting to feel like they just don't care so maybe I need to give up.

Reply

Labootz 16 My life and circumstances are for sure different from yours.

Your only dealing with Pbc. Most likely you have family support.

I am dealing with very evil humans in my life with no family support. I talk to my sister and adult daughter. I am dealing with aih and Pbc living in the swamps. I'm 53 years old and have not had any form of life in 20 years other than babysitting grown ups and taking care of children. Now a life of meds and the realization that the person that I'm supposed to trust the most got a life insurance policy on me and treats me very badly. I had to make him leave. In front of people he's one person behind their backs the devil lives. I need help with no one to call.

Reply

So sorry. I do have a very good support group which does help. I wish you the best.

1 like
Reply

Yes fight the good fight and enjoy each day, stay strong and positive.

1 like
Reply

Thank you. Can I ask you who your hepatologist is? I go to U of M also and at my last appointment , my Dr. didn't do any more tests even though the gastroenterolist sent the new AMA result of 75.2. I didn't care for her the first time I saw her , but she called me after I complained and asked for a different Dr. so I thought I would give her another chance.

Reply

Dr.Mellinger

Reply

Thank you. Please see my previous post again. I edited it. What would you do?

Reply

I missed the exact question? Do you see a hepatologist or gastro at U Of M?

Reply

Hepatologist, Dr Kwon?

Reply

She looked at my old biopsy and told me the liver doesn't feel pain also.would you ask for a different Dr?

Reply

The protocol would be the same if it's within the same medical facility they have to follow a protocol so you would be getting the same work up if nothing at all, maybe go outside to a large medical facility like mayo or whatever is the closest to you that has a respected hepatology clinic. Get all your test results first to bring with you . I think second opinions are a good idea so you aren't wondering/worrying.

Reply

Thank you. I thought maybe she just wasn't the best one to see. I will look into Dr Mellinget anyway and Mayo. Thanks again.

1 like
Reply

If you see Dr. mellinger it will be the exact same work up/protocol as Dr. Kwon because they work in the same clinic so not much would change and they are all working together so they don't like to step on each other's toes. I would go outside of that clinic for a second opinion if I were you .

Reply

Ok, good to know. Take care.

1 like
Reply

Good luck let us know how it goes along your journey I will be praying for you.

2 likes
Reply

You may also like...