Viewing a single comment thread. View all comments

ian4real t1_iuwpkrp wrote

Reply to comment by shitmattsays in When I was 32, I was told that my bones were like that of an 80 year old. I have built a web application to track bone health and monitor treatments for those like me. No sign-up, No personal data collected, Completely Free and Open-Source. by Abishek_Muthian

Hi. Unfortunately there’s no blood work for mutations, other than genetic testing and biopsy. I haven’t gone to the rare disease clinic. He ran all the usual bone related work-ups, calcium, thyroid, ruling out bone loss etc, review all my many bone densities, looked at X-rays of my spine and hip. Also, the fact I have not broken any bones in my life. He’s a rheumatologist professor at a Medical school. I think my prior doctors were quick to diagnosed me and get me out of the way. In my case I was going to being treated and it wouldn’t have helped. These medications can be dangerous taken for a long time.

1

shitmattsays t1_iux0qx5 wrote

Sounds all too familiar. We've done several rounds of blood/urine tests and our next step is genetic testing. I have an appointment with the genetics team at the Mayo Clinic early next year to see what they have to say. Cheers!

2