ama2 positive but nhs doing nothing

[Hastingsgal]

hiya,

I tested AMA positive in 2009 whilst doing blood tests. They wondered if I had MS. This was not a high positive (though it’s my understanding that it doesn’t matter: a positive is a positive). They did not do anything about it. No checks at all other than normal bloods.

over the years that AMA TITRE has got higher & higher and considered very high. In 2017 an AMA m2 test was done and was highly positive. They did a fibroscsn which was normal. Another M2 test was done privately & was negative for all AMAS. I made them redo the test because that’s always been positive. They redid it and it was positive for AMA but not M2. By now I don’t trust their testing though.

I have typical earth signs. Severe chronic fatigue & itching. I’ve had all sorts of allergy tests all negative.

I’ve got many gastro problems, severe dry eye, sicca etc, lots of things consistent with PBC. I was actually diagnosed with “pre-PBC”.

No one has followed up on anything since 2018 when Royal Free diagnosed the “prePBC”

Should I be getting GP to follow up on this?

My LFT’s have been fine. I’m unwell with autoimmune stuff “calcinosis”, Raynaud’s, oesophagus doesn’t work “motility” issues, swallowing problems, reflux, Haitus hernia etc.

Would I know things have progressed without anymore testing? I’m really worried I’be dropped through the nets of NHS.

regards, Amy

[Buttsy]

hi,

Reading you post it reminds me off my symptoms, I have positive ANA test anti nuclear centromere positive which I was told is suggestive of limited systemic sclerosis .

Have you had anti testing for autoimmune diseases other than PBC ? I was also told that I could have PBC but so far I have tested negatives for this.

Have you visited the website for SRUk , I think you may find it useful.

I would definitely be following it up and ask your GP for a specialist referral,then you should get the regular checks required, it may also be an idea to ask for further blood test to check for other autoimmune diseases.

Good Luck

[Hastingsgal in reply to Buttsy]

thank you for replying. They are currently testing me for Scleroderma as I have all the classic diagnosis. There’s just one more test which is highly specialised. That’s this week. I was lost in system during covid pandemic.

But I am definitely AMA highly positive plus AMA2 which is specific for PBC I’m told. It’s a mine field!

I also got sidetracked with very serious lung infections which now keot at bay by never socialising, no life basically. But I’m Well with now. CT scan on this shows ground-glass opacification & reticular changed which is not good. I’m a non smoker. That may conclude a more serious issue than PBC as it’s a death sentence getting pulmonary fibrosis. My dad died from it. So I have not been chasing up the PBC, but briber has my GP. My GP does not fo anything unless I bring things up. :-(. NHS is in a terrible state. I will check out; SRUk. Thank you!!

[234WARD03 in reply to Hastingsgal]

I'm afraid GPs are not very good when it comes to pbc. My one was honest and told me she doesn't know much about it, asked if I could ring specialist. I suppose we are the lucky ones to have help with urso as I don't think there has been much help in the past.

[Hastingsgal in reply to 234WARD03]

They are at least doing another ama which I know will be positive & then they move on to M2. If that’s negative, I will feel much better about things. I had to really fight to get this. They refuse to refer me to gastro for PBC until the results are back! Despite me actually having proven gastric problems! Currently I am focussing on the lung changes as that’s a more urgent issue.

Is it normal to be waiting 7 weeks for an ama result? I called Gp and asked to follow up but they aren’t. Very frustrating.

[234WARD03 in reply to Hastingsgal]

I had years about twenty, of going to gasterentology and doctors about digestive issues. I pushed for another barium. The gasterentologist said my case had gone on too long and when the barium didn't show up much she said to her staff get me some ? Swallow. Immediately she see it sticking and from there did other tests. Without her I would never have been diagnosed. Would never have treatment and liver blood tests would be doctor telling me I have a drink problem I'm not admitting. I don't drink, never have been big drinker.

Basically GPs, in my opinion, seem to bypass blood results and put it down to patient denial lifestyle. Probably because they know limited info on PBC.

I have lost faith in GPs. My gp has never given me an ama test, hospital did. Push to see that gasterentologist.

[Hastingsgal in reply to 234WARD03]

thank you. It’s good to know it’s not just me! Luckily, I did have the barium swallow, which did show motility problems and spasms. Lots of inflammation. So I now won’t have any medication in pill form because they just get stuck in my throat which then irritates it/damages lining. I’ve got strict routines now to avoid flare ups & ending up in A&E because I can’t breath from the spasms cutting airways.

one of the biggest problems with the GP is that they only have 10 minutes allotted. And off and I say they were only talk about one thing which is absolutely insane. Means I have to keep making appointments, which then probably makes it look like I’m some kind of hypochondriac or something. The NHS is totally broken. Thanks to our government

[butterflyEi]

Definitely go back to the GP and ask for a full blood count so that they can see what is going on. If you need a referral to a gastroenterologist/hepatologist you have to go through the GP unless you pay privately.

Take a look at the PBC Foundation's web site, they have a lot of useful information and a downloadable leaflet that you can take to your doctor.