ian4real

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.

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ian4real t1_iuutg6h wrote

Reply to comment by Abishek_Muthian 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

Wow. Funny story. When I was 22, I was told I had the bones of an 80 year old man (via an impromptu dexa scan, I worked there). I started treatment at that time. And quit a few years into it. I’m over 40 now and a new doctor ran a multitude of tests, and ruled out osteoporosis, instead diagnosing me with a very rare mutation of collagen. Referred me to the Rare Disease Clinic in LA (2 or so in the country). Just thought I’d mention.

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