Thank you so much @hopefullibrarian ! I really am grateful for your insights and just being supportive and empathetic. I'll watch the video and also see if it's possible to get an appointment with one of the consultants I saw to ask more questions. Fingers crossed.
I imagine it is rarely a straight science and people respond differently. Plus age and cause etc may play a part in their choices? I'm 44yrs, diagnosed at 18yrs. So I've had near 20 fractures and although I'm very restricted in what I can do now, I am so grateful to be receiving treatment and to have not had worse. I am fearful of the future and what may come as things deteriorate more. But I imagine others feels very similarly and I know there are people suffering a lot more than me, which is awful to think about.
Sending support and hope to all x