Hi, I finally took the plunge: this is my first post to the Mighty!
Until a year ago, I had *finally* managed to find a team of drs. who communicated with one another and supported me in coordinating my complex medical care. (Like so many of you, I had been misdiagnosed for decades, but was so incredibly relieved and grateful for having come upon a team of drs. who understood my case and dxd me properly.)
Then ... over the past year or so, I learned I have a multitude of additional and rare genetic and congenital health problems. (I've listed some of them below**, because I don't believe the specifics are relevant to my question.)
While my new team of specialists know one another – they're among a literal handful of specialists who treat complex cases such as mine – they are located in different parts of the US, using different EMRs, following different protocols related to HIPAA-compliant access to my medical records, ranging from moderately accessible to almost completely inaccessible with respect to patient portal messaging, etc. etc.
On some level I understand, given the ridiculously short amount of time allocated for each appointment by insurance companies, and, the ensuing post-appt. efforts made / required by many drs to, say, finalize documentation of the visit, prescribe Rxs, tests, procedures, etc. As a result I am filled with gratitude for those drs. who spend more than the 15 minute (or so) allocated appointment time adhered to by most drs.
That said, due to the diversity – in geography, medical record practices (EMRS and patient portals), local/state prescription policies and lab test capacity / availability, etc., etc. – I have not been nearly as successful in coordinating my care of my new crackerjack team of drs.
Does anyone have any advice for me?
Thanks so much!
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**In short: while I'd been diagnosed with hEDS, I learned I had all the accompanying septad dxs and then some; multiple primary immune deficiency diseases (PIDDs); autoinflammatory disease; periodic recurring fever (due to a pathogenic variant of a genetic mutation); mast cell disease; chronic bacterial and viral infections; autoimmune diseases; chronic Lyme, Babesiosis, etc. (I was infected for 1.5 years in 1988, and again for a few months only in 2017, before being dx'd ), autoimmune diseases, etc. etc.
#ChronicPain #PrimaryImmunodeficiency #EhlersDanlosSyndrome #JointHypermobilitySyndrome #IIH
#MastCellActivationDisorder #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #ChronicFatigue #DegenerativeDiscDisease #sjogrens #ChronicLymeDisease #LymeDisease #Babesiosis