EDSer, Multiple other "special rare" diagnoses. Finally GI dx gastroparesis, collapsing esophagus. Already + many other EDS related GI "issues" megacolon, endogenous fermentation syndrome, chronic & acute pancreatitis which snowballs into kidney & liver failure.
Here's the questions I have to find new GI. Curre 1 Said gastroparesis & esophagus "absolutely not related to EDS & will do nothing more for me"
Pain is debilitating, rarely eat difficult to keep fluids down, this is more often than not. Needing to gain strength for C-Spine fusion before "you're paralyzed & in a chair for life" I'm grandma to a dozen...have dysautonomia & TBI from too many concussions from brady/tachycardia. I'm in FL yet willing to travel. NY Langone is best for dysautonomia or Tel Aviv!! Can't keep putting off neurosurgery. Yet nutritional status is down the drain. 67 yr old desert old hippie dippie. Nothing is promised yet I've 1 (outta many) institutionalized child 32 yrs young, & want to be here as long as possible. Ty for any & all input. I'm
lost & overwhelmed. #haveextaordinaryfun #LivingAllRareGirlsExpoloring
#Gastroparesis