Getting diagnosed with new things all the time = scary!!!

I was diagnosed with PBC 2 weeks ago and was in bits as I have other conditions too.

I have now got back into positive mode, but I was referred to a rheumatologist for my joint pain which they thought was arthiritis but he says it's not and that I have Fibromyalgia (just one more thing to add to the ever increasing list in the last year). He also said I believe this is what you have and not PBC at al,l so he ordered more blood tests.

I went to the GP today for the results and she still says they believe I have PBC (probably early stages) and have referred me to a liver specialist, the blood tests were normal but she said that the rheumatologist asked for tests to see if I am jaundiced, which she says is a symptom in the later stages. I am so confused. I have had the itch for 25 years and joint pain for the past 3-4 years and I also have chronic fatigue so what do I have?

Don't know what I want to hear from you lovely people really, just know I needed to get that off my chest as apart from the itch all my symptoms are pretty similar for my lung condition, thyroid and fibromyalgia. I'm getting to the point where I don't want them to do anymore tests as they keep coming up with new conditions each time :(((

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  • Hello Lily-May.

    I am confused! Have you had what is known as the AMA blood test as yet? This is anti-mitochondria antibodies. This is how I was diagnosed with PBC in 2010. I started itching, went to the GP, he did LFTs and said they were abnormal and he then proceeded to do other bloods to rule out this and that. He then did a blood test that was to decide if the problem was liver or bone related and he came back and said it was pointing to the liver.

    Altho' it sounds like you have PBC I obviously can't say as I'm not a doctor but I do know that anything related to the liver can cause the itch as you have stated.

    A friend of mine was diagnosed with fibromyalgia later last yr due to having pains round her body. I'm not familiar with this condition, only know it by name and that you can actually get diagnose for this from blood work.

    It is possible for one with PBC to have normal LFTs as well but also I thought that if one was jaundiced then it would be seen outwardly as in yellow eyes for eg.

    The confusion would creep in to me here as if one was to be 'in the later stages' then surely the LFTs would not be normal? I'm pretty sure the liver specialist would know the answers to this and not a rheumatologist who can only point to certain things but can't say for definite as that isn't their field of medical expertise. I'd be more inclined to take notice of the GP here even tho' they only do general medicine.

    But besides the point, given PBC is a little understood condition, I think that is best left to a liver doc. I think that if you were so bad when your GP saw you he'd have had you whisked off to hospital as opposed to saying she will refer you to a liver specialist'.

    Hope you get your answer and soon.

  • The confusing thing for us is that we can get overlaps of a few auto immune conditions each of which comes with its own symptoms, so it really is difficult to know what relates to what condition. Unfortunately we cannot get the appropriate treatment without having all the tests, which I know seem endless but, until we have them we cannot be sure exactly what all together we are suffering with.

    Have you been tested for AMA (antimitochondrial antibody), because apparently having a positive AMA blood test is a good indication that you have PBC.

    Try and be positive, I know you are going through a really tough time at the moment but try and persevere and you will eventually get your answers.

    Good luck and best wishes

  • Oops sorry Lily-May for duplicating question on AMA as already asked by peridot who's message was posted while I was writing mine.

  • Thank you both,

    Yes it was the AMA result that the GP is going on, although it was only a slight positive result, this along with the immune suppressant blood result is pointing to PBC she said. I am very happy with my GP who has always been very thorough and I trust her completely.

    It was the rheumatologist that annoyed me and made me feel like I was making this up when I'd never even heard of PBC before. Didn't have much confidence in him and don't really want to go back to him in the future. x

  • I was sort of the other way around. The dr suspected I had SLE and sent me to the rheumatologist who then said I had fibromyalgia and did more bloods and found the positive AMA so was referred to the liver specialist and diagnosed with PBC.

    The fact that the rheumy is running more bloods for you is good as they should pick up anything else.

    My gp has now found I have a positive ACA aswell so is sending me back to the rheumy.

    They do say if you have one auto immune thing it can make you more susectable to others and a lot of the symptoms overlap.

  • I have two known auto immune conditions both relating to the liver PBC and AIH. I probably have other auto immune conditions too but am quite happy being blissfully unaware of them. Unless I get symptons that bother me I shall remain in ignorance. Good luck with your tests and hope you can get to the bottom of it and receive something to help relieve the pain.

  • Hi Lily-may ,can i ask what lung condition?? I have bronchiectasis which can(?)go with Rheumatod arthrisitis, also sjogerns, and thyroid now which can(?) go with PBC?? So it does seem to me once the immune system plays up it keeps playing up?? I have been refered to an immunologist?? Maybe he/she can give me and all of us some answers, i'll keep you posted.

  • Hi Lisacj,

    I have Pulmonary Fibrosis (lung scarring) caused by allergies to caged birds and mould.

    Hope you get your answers :)

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