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Professor David Jones says a Dexa scan should be done at diagnosis to give your bone density baseline for monitoring there onwards. My Gastro said ’maybe a few years you are young’ I am 49. Seems to undermine the concept of getting baseline info if I wait two years. Thinking of getting it privately. Have you had Dexa to keep on top of bone density issues / baseline?
UPDATE
I went ahead and had one organised by myself. I feel much better having a baseline ‘at diagnosis’ measurement which… read more
Answer Summary
Members discussing DEXA scans at PBC diagnosis strongly agreed that getting a baseline bone density scan early is important, with several... Read more
I'm 65 and have been getting bone density tests since I was 45. My mom had DDD (degenerative disk disease), and now I get a bone scan every 6 months, due to me having osteoporosis in my left hip. I am also on PROLIA.
As of now that I know of there has not been any changes. However, I've just been diagnosed with PBC in April.
Though through blood work some things especially my calcium have gone up from 9.0 to 9.5. 9.1 and above is where your calcium should be.
Please advocate for yourself. I am very insist for women to be an advocate for themselves.
You know your body better than anyone , even the physicians.
I have always had to advocate for myself. It gets exhausting at times. I have literally thrown temper tantrums to get them to listen. I have ,also, changed physicians for not hearing me.
Only you know, what needs to be done for yourself.
Prayers for strength and being heard🙏❤️🙌
I am going thru so much of same thing so frustrated my gastro just did my 3 month check and my results were out on his portal the key numbers all back in normal range on Ursodiol he was suppose to call me instead got call from his secretary or nurse saying your numbers are in normal range your good to go if you need us call when I started asking questions she proceeded to say I had fatty liver I’m good. I had to tell her I was diagnosed with overlap syndrome AIH and PBC and I will need regular blood checks. Tgey also didn’t like I was going for second opinion with Hepatologist so I’m sure that had to do with not caring about followup. The gastro never talked about diet exercise all which I did on my own after checking AI after was diagnosed. All very frustrating. Anyway feels good getting off chest. A kind lady on this site who has had PBC for long time gave me best advise. She said exercise, eat right, take your medicine everyday religiously and enjoy your life positive attitude means a lot keep stress away.😎💪
@A myPBCteam Member as you say that’s EXACTLY the same as me! My gastro also said nothing about diet or exercise or anything really. We really have got to stay one step ahead of them and tell them how it’s meant to be. That’s why I find those PBC Foundation expert Q&As so invaluable - I have learned a huge amount from them - and also all the great info here - and using also using the AI personal assistant feature here too.
Keep advocating for yourself ✅❤️💪
My Dr is really good and he's always asking for all sorts of blood work I'm actually feeling much better.
@A myPBCteam Member Good question! They might be the same thing but I also found this explanation which says they are not - take a look
https://hardingradiology.com/blogs/dexa-scan-th...
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