Discussions By Condition: Medical Errors

badly misdiagnosed for 3 years!

Posted In: Medical Errors 0 Replies
  • Posted By: ladybug2
  • October 19, 2008
  • 05:57 AM

My problems started out as coughing every time i ate anything,then it turned to drinking i coughed really bad also,i was put on acid reflux meds,told after egd i had ulcers and h-pylori,so i took all the meds i was told to take,a few months later i started it again.well i was sent back to the gastroenterologist and he said i was aspirating into my lungs,so he sent me to a lung doctor,which said i was not ,and sent me to my family dr again,and it went back and forth,putting me on all kinds of acid reflux meds,till i got sent to a dr that said my esophageal flap at the bottom was staying open,causing acid to back up and burn my esophagus,and i needed to have nissen fundoplication surgery,where they take your stomach and wrap around your esophagus to strenghthen the flap,and so now i can't vomit no matter how sick i get,and it still did not help,and during these 3 years i was told i needed my gallbladder out ,it was bad,and i had gotten a rectal prolapse from all the coughing i had done and had to have 18 inches of my large intestines cut out,which felt like i was dieing ,it hurt so bad.and all together i ended up going to about 15 doctors till i made myself and appointment with a neurologist and went through alot more painful test,and come to find out a few months ago i got diagnosed with polymyositis and primary lateral sclerosis,both very rare diseases,and i have them both,i hurt all the time,i have muscle spasms alot,can barely swallow most of the time,can barely chew,have bad headaches all the time,my arms and legs are very weak,i am fatigued all the time,i was put on immune suppresant meds and have to stay away from sick people afraid i will catch something because my immunity is way low,and so are all my blood counts.i have gained about 60 pounds since i got sick and cant seem to lose any and keep gaining ,now dr thinks i may have congestive heart failure or heart muscle problems from the diseases because i am swelling alot and chest hurts all the time.so mine went from acid reflux what they told me to start with to 2 deadly diseases that are rare to have one ,and i got both.so to me there are no rare diseases anymore,if i can get them any one can.if a dr tells you something you dont believe or understand go to someone else,look your symptoms up on the internet,i did,thats why i had a good idea of what was wrong with me ,thats why i went to a neurologist myself.:eek:

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