I have ehlers danlos syndrome, never genetically tested for vassular type but it is very likely, I lost appendix at 8, then tonsils, then gallbladder, then thyroid all to cysts or tumors that became diseased or cancerous., I now have a hepatic cyst on my liver 7cm, a 2cm by my gallbladder clips, and a 5mm mass on my rt kidney that has grown 2 mm in 8 months still too small to classify, I have GI issues from estophagas to anus, typically low BP, always low b12 (just started a 12 month b12 shot regimine) because I have complications with every surgery I have, my parathyroids were ruined with thyectomy, so low D3 and calcium. My meanie endro just downed me to 150 synthroid from 175.. I cant rememebr anything, have frequent bouts of aphsaia and talking jibberish, and im loosing organs to disease and mass hand over fist, is there anything else we need to be looking for? Can this all be because of EDS? Would I be a big asshole if I printed med journ info about EDS for all my docotrs to brush up and hand one to the anestiologist at surgery on the proper methods to use for EDS patient so Im not dealing with pain from disloacted shoulder after they moved me during surgery or the hole through my toung, busted lips, and the basic feeling like they dropped me.
Asked On : Fri, 22 Mar 2013