(psc support) first signs and symptoms

March 28, 2009

Hi all, so glad and relieved I found you all, I am currently waiting for an

official diagnosis of psc, my gp thinks it is this disease and i need an ercp to

confirm, my symptoms have been mildly raised alk phos of around 130-160 for 4

years and the normal range is up to 105,it has also returned to normal on a

numer of occasions within this period of time. my ggt has been around 58-60

normal range 45 and all other liver enzymes within normal range, I have been

found to have a mildly dilated common bile duct, have quite moderate upper right

pain under right rib and around same place in my back for 8 weeks which lead to

me going to get checked out, I have tested very weakly positive for ana antibody

at 1:40 which apparently may not even be significant, i have also got fatty

liver which is what they diagnosed 4 years ago when myliver enzymes became

abnormal, finally for 2 weeks i had an episode of a tiny amount of blood and

mucus in my stool(hopefully not too uch info)which has now stopped, i felt it

was down to anxiety and possibly mild piles but dr said could be UC

#Right now i am very confused because for ages i have been told fatty liver

although i tried to push for further testing and now after all this time they

are now saying psc, all my other blood work CBC etc came back normal i think. I

am very frightened as a 32 year old mother of 5 kids aged, 9, 8, 4, 2 and 6

months, i have gone through a very dark period of depression and terror over

this as all dr says is very fatalistic and that there seems like very little

hope with this condition, i get the feeling you are all quite positive about

things which has really helped me get things in perspective and there seems like

a lot of love and care for each other, this disease is almost unknown here in

scotland it would seem although the support group people are brilliant and very

helpful, whatever comes of my diagnosis whether i have this or not i will make

it my life's aim to raise the profile of this to help others, in the meantime

could people tell me what their first signs and symptoms were and if you think

mine are indicative of this?

I am really lost and alone over here and dont know where to turn, gp gets

annoyed with all my questions and doesnt understand my fear for me and my babies

and what the future holds, i would have thought my liver enzymes would have got

worse if ive had this for a while and perhaps would have had more symptoms than

just upper right pain and tiredness which i assume is from looking after 5

kiddies? maybe i am clutching at straws!

how long has everyone had this before transplant?

how did you cope in the beginning?

please forgive my long winded mail but trust you will be halping me so much by

replying, may God bless you all for all you do for each other,love and prayers

for all.x

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