Renewing my psc contact

[Guest guest]

Hi Everyone

About 2 years I joined this group but then became even more unwell,

sacked due to invalidity and lost internet access.

Having just gotten internet access I wanted to reestablish contact.

I am 37yo married mother of 2 girls and live in Laidley, Queensland

Australia. I was diagnosed with psc in dec04 after having been ill

for 12months before that. I actually suspect I may have had it for

up to 12 years as some symptoms started when number 1 child was born

but never followed up by GP and I was too young and naive to insist

on further tests. My psc is never predictable and I have been on

longterm antibiotics and urso 1500mg/day. The bouts of

complications are becoming more and more frequent (every 2-3months)

and with more severity each time. Each time my gastro says next

visit we are talking about transplant....then I get so well that it

would be crazy to list me. Each attack starts differently so its

rare to catch it before I get too unwell. My latest one was just a

general loss of energy and it has taken 3 weeks for the irritability

etc to present and for me recognise I'm need stronger antibiotics.

Usually I get jaundiced, itching (ice is the only thing that works),

bowel probs (have irritability in bowels but not IBS or Crohns),

dark urine, loss of energy, memory loss, confusion, irritability

etc. I'm one of those people who have a high pain threshold and

can't recognise I have a temperature so usually miss those two

obvious symptoms - crazy.

Thanks for allowing me to join your group. Anyone I was in contact

with previously, if you wish to reestablish contact or if you live

in Australia and New Zealand or anyone else you can email me

directly at michellekocsis@... (I hope thats allowed- I have

difficulty reading/comprehending lots of information) I've tried

to locate the small Aust/NZ group I used to be in contact with but

have not been able to.

[Guest guest]

Hi

Its

I am at the bottom of the South Island, New Zealand and at a guess

about old enought to be your Mum.

Its great that you are able to reaccess this amazing group, but not so

good that your condition is getting worse.

I will email you soon with the address of the Australia and New Zealand

group.

Best wishes

>

> Hi Everyone

> About 2 years I joined this group but then became even more unwell,

> sacked due to invalidity and lost internet access.

> Having just gotten internet access I wanted to reestablish contact.

>