PBC still not ruled out!

Dear All

As most of you are aware my story began last in July 2018 after routine blood tests for dizzy spells. My return bloods indicated weak but positive sign of PBC. The nursing specialist requested numerous blood tests, fibroscan and an MRI of my bile duct.

My lovely consultant confirmed all results are clear and that I do not have a fatty liver either which was a surprise to hear.

To cut the story short, the consultant is still concerned about my monthly blood tests and requested I have further tests - AMA M2 and Gp210/SP100 which were carried out yesterday! I'm also to undergo another Endoscopy due to discomfort still under ribs, hot spells and nausea !

For those following me I will keep you updated on my progress.

Also for the British Foundation Trust! Your team at The Royal Shrewsbury Hospital are the friendliest team I've ever come across! My consultant and nursing specialist are both amazing and caring ! Shame I can not mention there names!!!!

Regards Trish

[Candy12]

It seems your journey to a diagnosis or the ruling out of PBC as the case maybe, is continuing and must be a worry.

Have you looked at the PBC Foundation they support people with PBC and were a great help to me when I was diagnosed 10 years ago. There is medication for PBC that slows the progression , but your right there is no cure nor do they know the cause beyond it being autoimmune. I’ve put the link to the web site it may help you compose questions for your doctors. Hopefully you won’t need them, and all will be well.

pbcfoundation.org.uk/

[Hidden in reply to Candy12]

Dear Candy

Firstly many thanks for the PBC link which I'll browse over after sending you this note to you.

Like you, I've read numerous articles on the disease but cannot find anything relating to the cause. I have noted that you can have the disease for around 10 years before the symptoms start to appear!

It's not 100 per cent been confirmed that I do have PBC but my Nursing specialist and consultant have both said my bloods are pointing towards this disease , weak but positive for posdible PBC are the labs notes. Hopefully the latest in-depth blood tests will throw some more light on whats actually going on inside so that I can move on with life!

If its confirmed as PBC then I'll take the news like a pinch of salt and deal with it! I'm 66 fairly fit and very active with a young out look on life! Lol! Next I'll be swinging from.the chandeliers .

...

My only real concern is I'm allergic to so much medication plus tea and coffee which Ive not touched in over 36 years due to acute migraines!!! I mean acute!!! Injections to stop the pains by GP!

Anyway I'll cross the medication bridge should PBC be confirmed!!!

May I ask how your coping ?

Kindest Regards

Trish

[Candy12 in reply to Hidden]

I was diagnosed 10 years ago, bloods all stable on the meds and I carry on pretty much as normal eat healthier than I ever have which is a good thing.

Do have a read of the foundation there information is upto date a backed by there medical teams. They host a page on health unlocked as well. Hopefully you will get the all clear soon. But if not you have information of where to go for the best info and support. Let us all know how you get on.

[Hidden]

Hi Trish,

It sounds like you have had some good news - nice.

Wishing you a speedy diagnosis with an easily treated whatever!!

Yes, please keep us updated on how things are going for you.

Best wishes,

Mary

[Hidden in reply to Hidden]

Thank you Mary for your lovely note! Yes will keep everyone updated.

Nighty nite

Trish

[Wass71]

Hi Slaines, I meant to message you before to find out how you are getting on, but I got distracted and then forgot.

If you google EASL PBC guidelines, or link from Pbc foundation website it tells you of the criteria for diagnosis of Pbc. I think you need positive AMA and raised alp bloods to diagnose without biopsy.

You can have raised AMA without having Pbc especially if you have no symptoms, normal bloods. The positive of getting a diagnosis is that its likely to be very early in the disease process, and having urso at that stage has good results with preventing progression. The downside is having it diagnosed will affect your life insurance/ travel insurance even if it is unlikely to cause you any trouble!!

Hope you are still feeling positive and well, thinking of you, so keep us posted.

Take care x

[Hidden]

Hi Wass71

Firstly its lovely tohear from you again!

With regards to AMA and ALP blood tests, these have been belevated at various times over the last 9 months but my GGT has been constantly abnormal hence further blood tests!

This morning I received third appointment to see my liver consultant in September. I'm presuming over those 6 months I shall be back to more monthly blood tests. In the meantime I'm awaiting my Endoscopy appointment !!!!

Thank you for the EASL PBC info which I'll take a look at now!

Finally hope this reply finds you in good spirit and looking forward to the weekend.

Kindest Regards

Trish x