Confused

[Dese]

I was diagnosed with PBC last year been taking ursofalk twice daily. Anyway after 4 cancelled appointments I got to see him today got really confused I told him about feeling tired the forgetness and other things he told me point blank that none of this is to doing with the liver ok I said. He then said my bloods have gone down abit but he's going to put me on a higher dose.he than said he don't think I need a biopsy but he's doing one anyway. Has anyone else had this.

[EiJo]

I get what you are saying, I wonder if the name should be changed to PBC, C for confused, I have found every step of my journey from the moment of diagnosis to be confusing. Personally I keep taking myself in hand and giving myself a good talking to, the label of PBC is a label and how I feel is what really matters.

I have yet to speak to anyone who really gives me confidence that there is any light at the end of this tunnel. In the meantime I work really hard to keep a positive attitude and not let diagnosis and blood readings get me down, the illness itself can make a good job of that.

As you will probably tell by my post I am having a really bad few days, I know that they will pass and I will feel better soon, your comments struck such a cord with me, that confusion thing can be so frustrating !

Hope things become clearer for you soon, feel well and be as happy as you can.

Best wishes

[Dese in reply to EiJo]

Thanks for the reply I know I'm not going mad but he made me feel like that today. I will stay positive and I don't let it got me down. Sorry your having a bad few days Take care xx

[Hidden]

Hello Dese.

Being tired and having fatigue are associated with PBC. Fatigue is the actual sympton. I did have fatigue back in 2010 (was diagnosed December 2010) but I somehow 'lost' that sometime during 2011 but I do have periods of tiredness (usually later afternoon) due to broken sleep throughout the night as I itch, that is how I saw a doctor back in early 2010.

I think with a lot of other health conditions patients can experience fatigue but it is said to be one of the common ones alongside itching (pruritis) with PBC.

Sounds like your doctor is one of some out there that refuse to agree certain symptons are part of some diagnosis. I have to say that I've said in the past to a family member who was with me that I was feeling tired and I just got the remark, 'everyone gets tired'. I do think it is a broad terminology that can be unfair at times.

I can't comment on being forgetful as I have always seemed pretty much OK and though I still am at aged 52 now, I am not sure how in the future I will be with the ageing process and also finishing going through the menopause. Some women who have gone through this often say they find they have become forgetful.

I have never had a biopsy as I was diagnosed via having symptons first then it being found I had elevated (or abnormal as seems to be a terminology in the UK where I am) bloods (the LFTs, the liver function test that is) and then I was found to have a high titre of antiboides known as AMAs for short. I'd not agree to a biopsy if offered in future as it won't change treatment and I personally think that the 'staging' as it is known of PBC isn't wholly accurate as the liver is a large organ. Having a biopsy doesn't change treatment anyway. You will find there are lots on this site who have gone through a liver biopsy test so they will know more and probably give their experience.

[DeeSree]

HI Dese, If you do not need it then don't do it. expense and why? I was told I had to have it to be staged and yet in the end the Doctor said they didn't stage it and I was upset they told me that was why I had to have it and to prove I had it. Nonsense.. Good luck in whatever you choose though. I am improved with the Urso 2x a day and pray it stays that way... He reminded me again it is progressive and its a wait and see.

Dee

[Twinkle26]

Hi Dese

When I went back to liver doc for my biopsy results, I asked more questions and one was what can I do about the forgetfulness, he said it was nothing to do with the Pbc too. I was so shocked as I've heard many on here speak about it, now I'm worried I have another thing wrong.

Be interesting to find out if others got the same answer?

Carol

[Dese]

Hi that why I wrote confused because I really am lol. I have bad weeks so if it's nothing to do with PBC when like you said it's something else which mean all off us on hear have it. My consultant don't want to listen. My GP has referred me to a liver specialist got that appointment Jan 17. I will see what's happening there hopefully

[GrittyReads]

Hi Dese,

I was curious to know if your first consultant was a liver consultant, or not - as to me he didn't seem to know what he was talking about. Hopefully the actual liver consultant will be better- especially if he deals with PBC patients. If you don't already belong to the 'PBC Foundation' I would join - it's free, and there's a link to their website at the top of this page. They can help you if you phone or email and talk to their advisors. Also, the last issue of their magazine 'Bear Facts' had a summary of the latest research finding and discussion, and that shows a chart with the incidence of symptoms: tiredness and itching are among the commonest, but also there are muscle and joint pains and 'brain fog'. If you have to see the other consultant again, I would get a copy of this and take it along to show him.

Take care.

PS Someone else's reply: if you are in the UK, the biopsy shouldn't cost you; ... plus, it might help put your mind at rest to get more info.

[martinap]

I have found a perfect way for myself to show people what fatigue is instead of explaining. I made a combination of these articles on one page of paper and print this and give it to them to read or send it to them.

People want to spend a weekend at my house? Fine with me but read this first and make yiur own beds. Works like a charm!

Loads of positive reactionaire instead of "everyone feels tired once in a while" remarks!

pbcers.org/about-pbc/fatigu...

meassociation.org.uk/2012/1...

[Twinkle26 in reply to martinap]

Hi martinap

I downloaded and read the info you gave, so true I could relate so much.

I've made a copy.

Thanks

Carol

[Gioielli]

This is a heptologist that told you this! Unbelievable!

[Dese]

Morning yes it was I couldn't believe what he was saying I was just looking up at the ceiling I was so angry. I now go Thursday for my pre op and than biopsy in the next week or two. Not looking forward to that.

[Rockie in reply to Dese]

Dese I would very quickly find myself another ""super"" Specialist (if there is such a person). Really the knowledge that doctors have about PBC is terrifying, to say the least. I have learned more about my condition since I joined our group than what any doctor could have told me. Why do biopsy if it is not really necessary? Try and find out from the Foundation what you should do, depends where you live. I live in South Africa and the people not very clued up with PBC. All the best

[Jackie71]

Not sure my consultant or GP would come to the same conclusion as yours. When I see the consultant he always asks about tiredness and memory so it has to be something to do with PBC. I have been diagnosed almost 6 years now and through taking Urso (5 a day) and being careful what I eat I still have the tiredness but have lost the itch, my bloods are excellent but I can't get away from the fact that I do have cirrhosis, when diagnosed I was borderline PBC and it has shifted to cirrhosis. As everyone says it is mind over matter and you have to try and be positive, this site proves a lot of what you are told isn't necessarily going to happen to you. Just take each day as it comes, when you get tired they slow down or stop.

[teddybear7]

If you've not already join the PBC foundation it's in Scotland but has members from all over the world. The information is wonderful and it's been my godsend. It's free to join.

[Dese]

I am a member and yes they do help a lot

[moepag]

Hi Dese: I am in the US and my doctor often confirms that fatigue with PBC is very common although not usually the case with other liver diseases and disorders. They are not sure why.

I also refused a biopsy when I was first diagnosed. My liver function blood was not very high, MRI, and ultrasounds all looked fairly normal. Doctors wanted a biopsy so they would have a complete"picture" or baseline but all agreed I would likely be stage 1. I refused because the outcome would not change my course of treatment (Urso 3x per day) and was very unlikely to show a more advanced stage. I think if my blood work numbers were higher, indicating a possibly higher stage I would have agreed to the biopsy. I have since had a Fibroscan which did confirm stage 1.

It's difficult to determine what the best option is. I would also recommend you contact the PBC foundation to perhaps help you make a safe decision on this.

Best of luck!

[gmo3352]

Hi...i don't know if this helps, but my hepatalogist told me to watch for confusion, character changes and interruptions of sleep patterns. Apparently, they can be indicators of a toxin buildup, particularly anomia, because the liver is unable to process as quickly as it once did. But it can also be the result of worry, etc. If it is a toxin buildup, it can be medically treated. I so hope you can find a knowledgeable hepatologist to aid you. All the best

[Dese in reply to gmo3352]

Thankyou