Discussions By Condition: I cannot get a diagnosis.

life long struggle

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: julie78
  • January 3, 2013
  • 02:56 PM

Hi I have had many issues starting from about the age of !0 when i started to randomly pass out. Every test possible was performed from then on and no diagnosis everything came back clear. i was also diagnosed with slight scoliosis and have had severe skin issues. i noticed as a child i was slightly more flexible than most people and at the age of 15 had to had surgery on my right shoulder to prevent it from coming out of socket. besides the random passing out every so often i really hadnt had anymore problems until after i had childern. then i noticed more and more things and was diagnosed with IBS, Ebstein Bar syndrome a malformation in the bottom of my mouth where it dips in, a flat cornia, TMJ (which causes the most pain), and degenerating discs in my lower back and i have a hump on my neck from scoliosis . I am always in pain there are just some days better than others and every joint pops and cracks. most resently i was diagnosed with hemiplegic migraines and that was scary. my youngest brother was diagnosed young at the shriners hospital with ehlers danlos, my older brother had a aortic disection at the age of 30. both of my parents have died of cancer recently so i dont have much more info family ways but that my grandfather and my uncle have both been just diagnosed with Alpha 1 blood disorder. i am 34 and have two children. i mainly need help for them. thank you and sorry for the rambligs

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