I have an appointment with my Gastro Consultant today. I got a liver biopsy done a couple of months ago so I am expecting the results of that and I also got more bloods took last week as my consultant required ready for the results today.
I am a little worried, I've been having a lot of pain in the right hand side and also I have a nasty flare up of the spider type blood things on my chest and right hand. I am currently on Urso since Dec 24th alsong with Hydroxy for my Sjogrens Syndrome.
My Great Aunty Passed away last week from Autoimmune of the liver which in one sense i'm ok with as she was in her 80s however in another sense it's not good as she was only diagnosed with it around 5 years ago and had to get 2 blood transfusions.
This isn't really a question post more of a bit of a ramble on thought post as I know you guys know how I am feeling.
Sharon xx
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Shashwoo
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I'm glad you shared your concerns and thoughts here. Yes,,, we do get it. It's hard to not let your mind jump ahead when you get the liver twinges or feel some symptoms more than before. Ugh.. On one hand we are told to just 'live our lives" but.. but every time we have to wait for lab results or we feel a new twinge ..well it's a reminder that we do have this crazy weird PBC thing.
Thanks for the reply. My consultant say's i'm positive for PBC although early stages and it would seem I have AIH as a crossover. He has started me on Steroids to go along side my Urso and I had more bloods taken and my case has been passed to a liver specialist Dr Richard Thomas and I shall just await his appointment.
Not too sure what to think of this if I am honest it's all a bit of a shock that in the last 6 months i've gone from symptoms and no diagnosis to Sjogrens Syndrome confirmed, PBC confirmed and AIH Suspected.
We can all relate to the shock factor. It's a lot to wrap your head around at first. The good news is that you are going to be under care of a specialist. Give yourself time to adjust to the news, but know that there are many here who are a bit ahead of you and are doing okay. With the right medical team you can get a handle on this. Good news is that you are early stage. And there is more research and help in the pipeline that we all hope to benefit from.
If you haven't joined the PBC UK foundation yet, you might do that . They have great resources. Here is an awesome lay person friendly document on PBC and AIH
questions and considerations for you and your doctor.
Hi Sharon, I’m heading back to see my consultant on Tuesday too, after liver biopsy in January. I had bloods taken after that too. Looks like we are much the same in timing. I’m trying to be very positive but am still off work due to fatigue and painful muscles and joints. Please let us know how you get on. Always willing to listen and support you. Take care, Jane x
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Diagnosed today. Scared
High white blood cell count
Getting diagnosed with new things all the time = scary!!!
Just diagnosed with PBC
