← Return to Chasing the Diagnosis - Journey of an "Interesting Patient"

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@dataguy

Thanks for the warm welcome @sueinmn ! Also, I appreciate the feedback on the overall summary! With regards to the physicians being a part of the same group/practice per se, they are not. I have been gathering all of my test results (numerical and text-based) and have created the above summary as well as a spreadsheet of bloodwork with timestamps as well as a custom metric that identifies irregularities (not specifically the ideal ranges, but if something goes up or down drastically in recent tests or is an outlier of previous tests) to help me and the physicians I share it with get a full picture. And as it deals with a physician managing my care, I haven't quite found that yet. My primary care provider is becoming more and more of a sounding board, but I actually schedule the appointments, follow-ups, and circle back up with learnings. Part of me wishes that I did have a "ride or die" physician managing all of this and collaborating with each doctor that I have to engage with so that I am not on the hook, plus I don't know what I don't know, but I am making due. My family seems to fall inside of the medical mystery area, whereas someone had cancer, but after seeing a few different physicians everyone said nothing was wrong, but she was persistent and went to Mayo since she didn't want to play games with her health, and low and behold, it was cancer, but it hadn't spread, so things worked out.

With regards to having electronic records of everything, I created a cloud-based repository (I super secured it too!) with my imaging, bloodwork, and visit summaries if anyone was really curious. But overall, thanks for the questions and the feedback! Definitely looking forward to continuing to navigate this and find out what is going on.

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Replies to "Thanks for the warm welcome @sueinmn ! Also, I appreciate the feedback on the overall summary!..."

It looks like this has become a mission for you – have you considered checking in with Mayo or another integrated, multi-specialty provider?
I am fortunate to be in a large multi-specialty clinical group with a long-time trusted PCP who watches over everything – and with a single, integrated medical record system. It was actually a sharp-eyed radiologist, looking at an x-ray for something else, who originally suspected the mycobacteria infection that was plaguing my lungs and reported it back to my PCP – after almost 3 years of struggling for a diagnosis, I was finally referred and treated.
Sue