Please let us know, so we all can try and help you?
YES! Frustration does come with this territory.... No doubt about it.
Just keep at the attempts to get DIAGNOSED! It could save your life. I know it did mine.
This is a good read, especially the 'charts'...look and realize that our issues aren't THAT easy to really diagnose, let alone treat. :
http://www.aafp.org/afp/980215ap/poncelet.html
Rightfully you are scared, but being scared and SMART is a heap better then being scared and going: 'OK doc'. Even tho you don't know what you have? You've got to learn how to ask questions to get the doc on track for YOUR diagnosis! Start out with this 'stickie' and work your way thru the 'learning curve'. It's not easy? I'd started out totally web-ignorant and JUST followed my own instincts-turned out I'd Truly something wrong! While there are times I wish I could be ignorant? I'm FAR better off and safer for all the 'knowing', a lot of which I''ve found from folks here and research.
Do let us know how you are faring, PLEASE? This is not-fun stuff, and we help each other to cope in many ways... One being? THAT you are NOT alone! 's till later, better hear from you, please?
Sometimes, I think that IF we all beat our heads against walls simultanesouly? {sp?-Who cares?} we'd somehow make an impression in the medical world.... Sure would like to THINK IT'S SO! - 's a lot! - j