First Time Posting/Looking for Feedback - Hip/Bone Marrow

Posted by redbasin37 @redbasin37, Feb 18, 2019

Out of the blue my alkaline phosphates came in two times the normal level. It turned out to be bone phosphates. Without a lot of communication or instruction, I showed up for a bone scan that showed multiple spots in my pelvis, this led to a CAT scan that confirmed what the bone scan showed, they recommended an MRI to map a route to a biopsy. The MRI showed heterogeneous marrow in the right posterior iliac bone and ischium, confirming the two previous scans. I was finally able to connect with my doctor (primary) after multiple attempts, she shared she was waiting for an email from an Ortho whom was reviewing the MRI. Finally over a week later she received a short message, that there was no tumor to biopsy, I did not know they were looking for that, and that they were setting up an appointment with an Orthopedic and would do an MRI again in 6 months. This has been going on since early December and honestly I don't feel comfortable with how we are moving forward. I have nobody to talk to and I have reached to my doctor again for clarity but was hoping someone could share that they had a similar experience or that this is a normal process. My doctor had mentioned Paget's but that has not come up. I'm thankful for not having a tumor but what do I have or could have? What am I facing or is it nothing to worry about? Thank you for the help / feedback in advance.

Hi @redbasin37, welcome to Connect. I'd like to invite @arthritichands who has talked both about a biphosphonate and Paget's. If you don't mind sharing a bit more about your situation, it may help other Connect members join the discussion with similar experiences. For example, if you are comfortable, was this issue discovered during a routine exam, or did you have some sort of side-effects or issue that indicated something was wrong? Have you thought about seeking a second opinion since you are uncomfortable with the waiting approach?

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