Update after appointment at Kings

[Millie2014]

Good morning everyone. I had my appointment at kings on Monday. I saw a lovely consultant called Dr Harrison. He is confident he will be able to get to the bottom of the liver issue. He says it is complicated and he may not be able to answer all my questions but he should be able to answer most of them especially the liver issues. I have had loads of blood taken testing for rare diseases of the liver and bile ducts. I am going to have an mri and another fibroscan and go back in 6 to 8 weeks for the results. I feel much more positive and kind of relieved that I will more than likely get a diagnosis soon. I will keep you all updated. Thanks for the support you have all been great.

[ThreeSmiles]

Oh that’s so good about the scans - hope you get favourable results or at least a firm diagnosis! It’s such a shame though to have to wait so long for your results ☹️.

Good luck, Millie

Miles

[Millie2014 in reply to ThreeSmiles]

Yes it is a shame. One of the blood tests takes about 8 weeks for the results so I think the Dr wants to give me all the results at the same time so we both have the full picture. Hope you have a good day.

[Millie2014 in reply to ThreeSmiles]

How are you feeling after your operation? I hope you are on the road to recovery. Thanks for taking time out to respond to me. 🙂

[ThreeSmiles in reply to Millie2014]

Op was very good thank you 👍. Those results for your blood test take a very long time! Must be an unusual test - oh yes you said some of the tests for rare diseases! Hope you haven’t got anything bad....

Miles

[Millie2014 in reply to ThreeSmiles]

Thank you. Glad you are ok. 🙂

[carmik]

Great Millie

You are now on the right road. Keep my fingers crossed for you.

Alpha 1 test takes weeks so maybe they have added to the list. Not many medics know about it unless they are a Hepatologist.

[Millie2014 in reply to carmik]

Yes I think he may have mentioned that test along with many others. He has my biopsy results and he hopes that with the tests and scans the diagnosis will be clearer. Thank you.

[davianne]

Hi Millie, that's great news, at last it looks like you will get a diagnosis. Your Hepatologist sounds like he's very thorough. I hope the results are all good, and worth waiting for. Keeping everything crossed for you 🤞🤞🤞

Can I borrow your doctor, when you've finished with him? 😊😊😊

David

[Millie2014 in reply to davianne]

Hi Davianne I cant recommend him enough. Hes not diagnosed me yet but he was so calm and interested. He has a great bedside manner, allowed me to speak and actually listened. 🤞

[davianne in reply to Millie2014]

Millie,

Your very lucky.....you've got a good one there👍👍👍

Mine couldn't be less interested if he tried👎👎👎

He ignored me so many times I began to think he was deaf,😢😢😢

David

[Millie2014 in reply to davianne]

I know what that feels like I've seen plenty like that over the years. One was so disinterested he was falling asleep!

[Hidden]

Great news Millie2014 ! Much more reassuring for you. Jaycee

[Millie2014 in reply to Hidden]

Yes definitely, I feel lighter already .

[Hidden]

Fabulous news Millie! My fingers are crossed for good results when you see your consultant again!

Love Trish x

[Millie2014 in reply to Hidden]

Thank you Trish. Much appreciated 🙂

[mayohiii]

Good Morning and Hello

[Millie2014 in reply to mayohiii]

Good morning to you.

[RodeoJoe]

Great news! I never ever got a diagnosis and I'm post transplant. Hopefully they'll find the cause and give appropriate treatment though.

[Millie2014]

That must be quite an usual case to not have a diagnosis but need a transplant. I hope you are doing well since the operation.

[Hidden in reply to Millie2014]

Hi

I'm so pleased you have got a great consultant and that's he's listening to you. Love and hugs Lynne xxxx

[Millie2014 in reply to Hidden]

Thanks lynne I'm definitely feeling positive x

[Hidden in reply to Millie2014]

That's great, I'm so pleased for you. Love and hugs Lynne xxxx

[Hope1011]

Hi Millie,

So happy for you. Hope they get to the bottom of the cause for you. It is vital to know what the problem is is so it can be treated properly.

You, say one of the test takes 8 week, do you know which one is that? Never had anything like that, interesting!

TC

Hope

[Millie2014 in reply to Hope1011]

Thank you for your support. I'm not sure which test takes 8 weeks but it was a genetic disease. The issue I have is that my common bile duct is not draining which could be an autoimmune disease. The liver biopsy looks like possible pbc but it's not what they would expect to see if the bile was flowing back into the liver so its complicated. Will update everyone once I have my results at my follow up appointment.

[CarpeDiem11 in reply to Millie2014]

Hi there, I had these blood tests too and they were pretty vague about which ones they are testing for, but JAK2 is one of them and they do take this long to be processed. In my case they were looking to see if there were reasons for my blood clotting. In my case nothing " of interest " came up! However, it then confirmed that my liver was the culprit, they just wanted to be sure they weren't missing anything. I hope they solve your puźzle. All the very best.

[Hope1011 in reply to Millie2014]

All the best. Fingers crossed for you 😊

[Bungalow68]

At least you will get some answers.