PBC Foundation
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About time lol

I finally hav another appointment with gastro... I saw this new consultant back in October, he said he would see me in 3 months but it has been 7. He did arrange an urgent colonoscopy for me because I was having a lot of trouble, but I have discovered what caused me to have the problem. I will explain when I see this consultant on Tuesday. I do not really like this new doc, he seemed to have no idea about my AIH/PBC and I would like to see a different doctor. I know a lot has been happening with me including pain in back upper right, and my fatigue is getting me down today, there was also an odd incident happened in Feb....I woke unable to breathe and in absolute agony, I gave a huge couple of coughs and there was a wierd inflating sound and the pain then eased but left me with a dull ache in my upper chest, which moved into my neck and then the bottom right of my head. I have no idea what it was, I just felt exhausted afterwards. Went to the doc ans she said it was muscular......I said what, to the point I could not breathe and was in agony. Since my reading has been off, I misspell words and my speech is off as well.....I sometimes get words mixed up, say the wrong word for something and forget words...I just don't know what is going on.

I will have along chat with this doc on Tuesday and if he is still no wiser regarding me and my condition, then I will ask to see another doctor.

Any idea what could have happened in feb ?

Thank you xx

2 Replies

Could it have been costochondritis? It's in my head at the moment, as I've just replied to Notor, about this, but it is the weirdest condition.

I had a terrible bout last summer: thought I was having a heart attack, and it stayed for about 8 weeks, coming and going, with the strangest pains, all pretty much in the whole rib cage area, although with all sorts of referred pain. Also knock-on effects, I gather, as we get so stressed and tense. But my GP examined and tested me to distraction: mammoth bloods, EcGs etc, X-rays ... to rule out all other possibles.

I would keep on asking questions and trying to get answers, but this may be a possibility. The only solution at the time is ibuprofen type drugs - which of course we're not supposed to take, and to cut stress. From what I've read it is fairly common to PBC folk, but also when anyone is under stress. Also if one loses strength and body tone. Once it's gone my GP advocated really building up strength ... easier said than done, the first time I tried to return to exercise I just triggered it all again.

Check it out, but meanwhile try to do things you love to cut the stress, as that's the main enemy in all these conditions.

Take care.


That sounds pretty odd I do get muddled words can't spell when I used to be able to. ..forget simple mames etc think this is the pbc

But the other stuff sounds maybe like lung or heart...but lm no doctor did have pleurisy once and that was agonizing chest pain felt like a belt round my chest very tight so that I couldn't breathe in or out but this doesn't really sound the same as your experience .Think you are rigjt to go back to docs as could be completely unrelated to liver. Good luck. Cazer.


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