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Dear Lisanne,
I am very sorry to hear of your two decade long journey with OP. I assume you have a very skilled and knowledgable doctor to guide you. ( if not, find one - mayo clinic or bone specialty group ) My OP is not primary - and it is excerabated by metabolic and genetic issues. My foot fratures ( over the course of 6 years) in both feet included metatarsal, calcanesous, talus, cubiod and cuneform bones - so all the bones of the feet were weakened. That is not charariteristic of OP - however improving bone quality will help and has helped them. Thank God. I used a Exogen machine, mind body visualization, to help healing and was on tymlos ( still on tymlos). Your situation with early onset OP is unque so get the best care you can. I suggest reading Great Bones by Keith McCormick ( he still does counseling if you are intersted) so you get began it understand bone metabolics. As offered in above post the below two articles are helpful in understadning bone markers so you can ask questiosn about your current levels ( and make sure you took the test correctly at the right time and being off certain supplements.)
I send you psoitive energy for your healing and postive outlook for a healthy and happy future.
https://www.mayocliniclabs.com/api/sitecore/TestCatalog/DownloadTestCatalog?testId=83175
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https://food4healthybones.com/wp-content/uploads/2022/10/The-Importance-Of-Bone-Markers-With-Dr.-Keith-McCormick.pdf
Replies to "Dear Lisanne, I am very sorry to hear of your two decade long journey with OP...."
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Thank you for your reply. I have talked with Dr. McCormick twice. I do have his book and have read it. I did do the tests correctly in terms of timing, fasting and no supplements. I also do see a doctor at Mayo Clinic since last November. I did have an endocrinologist locally that was knowledgeable. I also have been using the Exogen bone stimulator. I keep wondering if there is some other underlying cause to the low bone turnover. I was recently prescribed Tymlos but I am not sure I really want to start another med. I have taken this in 2018 for 15 months and then again from August 2022 through February 2023 when I switched to Evenity for 5 months which I discontinued due to side effects. I have taken HRT since 2018 when I hit menopause. If it is not too personal, I am curious about the genetic and metabolic issues that you have faced. I also discovered I have MGUS in 2023 because of some bloodwork I had done looking for any autoimmune disease. Thank you for your help and I certainly wish you a healthy and pain free future.