No diagnosis as yet 😔

[Ochredreams]

Hello all,I am new to the forum and thought I would just see if others here were like me.

I tested positive for AMA last year after getting routine blood tests done as I was (and still am) getting mouth ulcers on my gums.

I was referred to the liver clinic in my local hospital and have had a load more tests done and the doctor told me I may have PBC based on the positive AMA result but my ALP is normal (81) so it may not be that.

I have to undergo more blood tests for a full blood count and fibrosis because my test clotted and I am unable to get results from the fibroscan.

My ALT was raised along with GT and IgG but my ALP and IgM was all normal.

The doctors are unsure what is causing my positive AMA results and wondered if anyone had the same issues?

Thanks for taking the time to read this message and I wish you all well ♥️

[gillrich]

Hi have you asked the Pbcfoundation.org.uk for help in understanding your symptoms they offer the most up to date and accurate info xx I am one of 2 volunteers in Nottingham for the foundation.

[Ochredreams in reply to gillrich]

Thank you so much for your reply!I was a little worried about bothering the charity in case I was wasting time as I don't have a diagnosis yet.

But you are right I will contact them after the bank holiday and see what they advise 😁

Have a lovely weekend!

[gillrich in reply to Ochredreams]

You will never waste their time you need some peace of mind and that is what they so incredibly do

[Michi1]

Elevated AMA can come with things other than PBC from what I’ve seen. There is a type of autoimmune response that involves mouth sores. I think it’s called lichen planus(?) My mom gets it and her dentist told her what it was.

Typically in PBC there is elevated ALT, AST, and ALP in a certain pattern. Hopefully for you, your AMA won’t be from PBC.

[Ochredreams in reply to Michi1]

Thank you for your reply Michi1. I too hope I get answers soon as it's horrible being stuck in the middle and not knowing what's going on 😞

[Readlots]

Hi, waiting for results and thinking about all the possibilities is often worse than the actual diagnosis. You’ll hear this a lot on this group - don’t Google! PBC Foundation and British Liver Trust are both fantastic sources of information. Both have helplines so whatever the results, you’re not on your own 🌷

[Ochredreams in reply to Readlots]

Thank you Readlots!Yeah you are right, waiting for results is the worst. Plus all these blood tests are making me feel like I'm getting attacked by medical vampires on a weekly basis 😂

It's nice to have people to speak to who know what it's like going through this. ♥️

[Readlots in reply to Ochredreams]

Absolutely! The pin cushion experience will calm down once you’re diagnosed. I have a blood test every 3 months now because of the medication I’m on - so not too bad. I think others go 6 months. I hope you get some answers soon 🌷

[periwinkle88]

I have confirmed PBC (via biopsy) but my alkaline phos has never been elevated, or anywhere near the top of the normal range. My ALT and AST have been slightly elevated at times, which is why further testing was done. (Plus, I have Hashimoto's, so they knew to look at autoimmune diseases.) I was diagnosed in 2012 and am still early stage. What I have been told is that besides still being early stage, my variant of PBC may be mild and look more like autoimmune hepatitis with labs, but it is confirmed PBC. So you may be early stage and/or have a variant like mine which manifests with the elevated ALT and AST but not alkaline phos (yet).

Good luck! I think the worst part is the in between where PBC is suspected but there are no clear answers yet.

[Ochredreams in reply to periwinkle88]

Thank you periwinkle88, this is very informative. I have yet to see the Drs in person as some of my blood tests clotted and I need to get them done again to see if I have fibrosis.All this came about because I went to the GP as I was getting mouth ulcers every day and they were worrying me.

I was sent to a specialist who told me it was normal to get them and some people are just unfortunate.

I would have been happy with that answer but my GP was still unsure and it was through blood tests that they found a problem with my liver.

I've never been a big drinker so it shocked me when the Dr asked had I had any issues with binge drinking and I told him the last time I had a drink was a small glass of champagne at a wedding I attended 3 months prior and half a Guinness. He laughed as that's not much at all 😂

Sorry I'm rambling but it feels so nice to be able to chat with people like yourself!

[periwinkle88 in reply to Ochredreams]

It sounds like you have a great GP. You're very lucky. It can often take years for people with autoimmune diseases to get a proper diagnosis. I'll cross my fingers that you don't have it, but if you do there is a lot of support and good treatments available!