Need input

[Robin15931]

Went to drs today. Found out my AMA was 62. Still not issued urso. Doubled my Neurontin for FM. Ordered oxygen tanks for COPD. I am no longer able to do my job so she did say that she would sign the disability forms. MRI of liver was normal. Lymph nodes are swelling at an alarming rate and progressively getting worse. Has ordered me to go to a gastro dr for upper and lower gi. Plus a sleep study in hospital over night. Does this sound familiar to anyone?

[GrittyReads]

Hi Robin,

I'm so sorry to hear of all that is going on with you, and I hope you get some answers soon. I read your previous post to understand more of your situation, 'though I confess to not recognising some of the details you describe - so I don't know how much of it is typical of PBC.

So - as a pure guess - I would think they are still trying to find out 'exactly' what is going on, before they give you medication. Urso is currently the only drug for treating PBC (although other impressive sounding developments are in the pipeline), but Urso can have some side effects, so it's not given just as a precaution unless PBC is absolutely confirmed.

For comfort, reassurance and up-to-date advice and knowledge, your best course of action is to talk to the trained advisors at the 'PBC Foundation'. They host this 'PBC' site on the 'Health Unlocked' forum, and there is a link to their site at the top of this page. This link will take you to phone numbers and email address where you can contact their advisors and talk through your exact situation.

It would be helpful if you have your letters from consultants etc, and any blood test results and liver function tests results, to hand when you talk to them. If you don't have your own copies of these, you are entitled to them. In the UK it is your 'right' to have copies of letters and results from your GP practice (their may be a small charge for copying, but my practice doesn't bother). You mention your AMA reading, but the PBC foundation 'Factfile' booklet says that the actual level of AMA has no significance on the severity of PBC. Also AMAs 'on their own' are not enough for a diagnosis of PBC, so your liver functions test results are as important.

Overall, though, do try to look after yourself, treat yourself and do all you can to de-stress. I realise this is easier said to done, but all illness, especially autoimmune conditions thrive on stress, so coddle yourself as much as possible.

Take care xx

[JennyCville]

Robin15931 - I've been told that a positive AMA quite accurate for PBC. Are you seeing a hepatologist? I imagine the sleep study is for the COPD/ FM. You have a lot going on (I am complicated, too, with an immune deficiency). I really think a hepatologist would be better for the liver issues. Where do you live? Is it easy to get in with specialists? I have found that my issues are above my GP's pay grade...he even admits it.

[TeddyC]

Hi Robin,

Like yourself I have had a positive AMA. I have now had 2 tests one result 72 and the other 50. I do have symptoms of fatigue and itching, but normal LFTs. I have recently seen a gastroenterologist and was informed that I am at a high risk of getting PBC, but that I do not have it yet. I am to have liver function tests every year and if these are raised I will be referred back to him for treatment. Hope this helps.

Take care xx

PS forgot to say, ultrasound of liver shows fatty liver - I am now trying to lose weight.