AMA Only, But no PBC?

[skywalker]

Am I the only person in the Country who has the anti-body without the pbc?

I have AMA only, I itch, tired all the time, but LFT ok.

Its very frustrating for me, I don't know where I stand with it.

Does anyone know if there are many people who have the anti-body only.

[Jtxx]

I am the opposite of you. I do not have the AMA antibody but my liver biopsy came back that I have PBC! I also have the SMA antibody which means that I have AIH as well as PBC! They call it a crossover condition. I don't have the itch but I am tired as well. My billirubin count is normal.

Hope you get some answers. It's all very confusing at times. The only way to diagnose properly for PBC is to get a liver biopsy. Good luck and Merry Christmas.

[lorac]

I also had AMA with normal LFT but was very tired, exhausted and at times my bones ached. 5 years on and i now have the itch and abnormal LFT and earlier this year started taking Urso.i also have a constant ache on the right side of my back where the liver is. It seems PBC has its own way of presenting itself to the individual.

[Jtxx in reply to lorac]

My consultant told me that I should not have any pain but I have a more or less constant ache on the right side of my side/front. I find it frustrating that there is no black and white answers with the condition. X

[Tessa]

Hi Skywalker. I was diagnosed with PBC in 2008 based on positive AMA ,ultrsound scan and symptoms (fatigue, energy drains, joint and bone pain, weakness in arms, itch) My LFT's were normal and the scan showed no problems.

[skywalker]

Hi Ladie's

WOW Tessa, LFTS normal. This is what frustrates me. What did they tell you about your ultra sound scan? They said I have abit of fatty liver, but because my lfts are normal, I haven't got it. But I honestly struggle with my fatigue, my joints ache and I itch.

Doctors make me feel stupid.

I have a patch of vitiligo on my tummy, but thats not spread or changed since I noticed it last yr. My eyes feel dry most of the time, and my sleep quality is rubbish. My husband can't believe how often I keep trying to get some winks, when he see's me dozing he wakes me up.... He won't let me rest when I need it. I have two young boys 10 & 8 and I work in a school kitchen, and Im struggling with it.

I'm having a hysterectomy on the 13th January, so I can rest for a couple of months.

Oh and Tessa, which hospital do you go to??

I went to Addenbrookes in Cambridge

I hope you lovely ladies have a fantastic Christmas & Happy New Year!!!

Thankyou for the replies xxx xxx

[PBCRobert Partner]

Hi, Skywalker.

The AMA test is about 95% accurate, although there do seem to be some exceptions. Still, positive AMA plus symptomology would strongly suggest PBC.

Perhaps you can message me with some details, and I will try to reply to you in as detailed a way as I can?

Merry Christmas,

Robert.

[wendyh]

i was told that positive AMA was diagnosis enough for PBC. my scan said all was ok just a few small gallstones and my LFT's were a 'little strange'.

i have been on Urso for a year and my LFT's are back to normal.

Happy New Year

Wendy

[skywalker in reply to wendyh]

Hi Wendy

Ive just had my annual lft's done, I rang the surgery for the results and the receptionist said, "Everything is normal, No further action needed". I think I may ask them to send a copy to me, because I don't know anything. They don't share anything with you!! I think we're suppose to nod and accept what they say!

Because I know how sneaky this bloody disease is, I find it difficult to accept, especially as I'm always itching and wanting to sleep!

My doctor has even said if my lft's show normal after two years, they're not going to bother checking my lfts anymore?

I will put my foot down with that one! I can't leave it and just not do anything, knowing I have the AMA!!

It's easy for them to suggest all these things isn't it?? It's not them buggers who have a positive AMA, It makes me so angry.

No-one in the medical profession takes me seriously and think I'm making too much fuss or worrying over nothing.

My doctor thinks ive read to much about PBC online and have developed the itching as a direct result from reading about it!!

My sister died last year age 42 of liver failure of all things, but it was booze that killed her, but my anxiety went through the roof! And now my doctor thinks that ive got some kind of liver association thing thats to do with my sisters death.....and don't take me seriously!

The only person who managed to help me with my anxiety was Collette at the foundation, she was unbelievably understanding and patient and kind. But its all left me in a funny place because my doctors think its all in my head now. Sorry I know I'm drowning on.... Hope I havn't bored you silly.

Happy Healthy New Year.....................xxx

[Jtxx in reply to skywalker]

So sorry about your sister. You have to stay strong and ask legitimate questions and voice your concerns in an organised and rational way so they take you seriously. I type them out and take them with me so that I don't forget anything. Take care. X

[JaneIng]

Hi skywalker, I ran into your post today, I noticed the post is 5 years ago but it is still relevant to me. I have similar situation like yours - high AMA, normal liver enzymes. MRCP is normal except dilated common bile duct which my doc say is due to gallbladder surgery.

Just wonder if this post will reach you and if you have any updates in the diagnosis and/or changes in the blood test.

Thanks,

Jane

[Sarah4314 in reply to JaneIng]

I am the same AMA positive but normal lfts.....for now they just see me yearly....I hate not knowing

[JaneIng in reply to Sarah4314]

Thanks for the quick response, Sara. I am almost two years into the AMA positive diagnosis. Hope I will stay in normal LTFs for a long time...

Wish you good health and a wonderful life.

--Jane

[Sarah4314 in reply to JaneIng]

Same to you...I am about two years also