Pbc porphyrya

Hey,, how are you all?? Met up with candy couple days ago.. Very nice lady and was glad to actually discuss this disease with someone who has it for 6 years now... Makes it a little less of a worrying at the moment.. I had mri scan Monday which my rheumatologist told me there is significant abnormalities on my brain 😔.. Now been tested for systemic lupus... If it's not one thing it's another.. I didn't get to c my rheumatologist but his registrar who was from Greece.. Awesome consultant..wish the English ones who take notice.. Maybe would resolve more diseases quicker.. Now got wait till 11 Nov in Southampton to c top neurologist for my results.. Thinking positive... Take care guys xxx

6 Replies

  • Hi

    It was nice to meet you and I hope you gave some thought to calling the PBC foundation who would be able to answer your spacific questions. Hope your appointment goes well on the 11th, take care x

  • Thinking of you!

  • Rooting for you Anne - let us know how you get on. kind regards

  • Good luck on November 11th and take care from a newly diagnosed fellow sufferer x

  • Hi Anne, good luck with your test results in November. Thinking of you.

  • Hello Anne-laure,

    I have read your post and i have sent you a message.

    Best wishes

    PBC Foundation

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