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Mine just keeps saying that I’m stable and that’s all that should concern me but I feel like I’m in no man’s land without knowing what’s happening
I think it is because they do not know!!! We are better off doing our own research. I do have some good people to talk with about my mess though. My dr is very good about calling me sometimes even on weekends and evenings. Guess I should feel lucky about that
Are you having trouble getting clear answers about your PBC stage from your specialist?
It's completely understandable to feel frustrated when you're not getting the information you need about your PBC stage. Feeling like you're "in no man's land" without knowing what's happening with your condition is a valid concern.
You’re probably right but it’s hard to fill out the forms I have to fill in at the mo regarding my need to cut down my working hours when they won’t answer my questions. I have have read so much about PBC I could lecture on it but my knowledge doesn’t mean a thing when you’re trying to get something out of the government 🤣🤣
Exactly. Why should we feel embarrassed? I understand that I have complications but haematology have been saying for years that I have stage 4 liver cirrhosis and yet my hepatology’s won’t tell me anything about what’s going on inside my body. Mad
Tina, I'm right there with you. My doctor doesn't tell me anything either!!!
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