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Originally Posted by LJSDesigns
I am sorry that you are dealing with a level of incompetence that should not be in the medical profession. It sounds like you are doing the best your can with the hand you have been dealt, but it sucks that you have to deal with it.
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The worst part about it is...in the Spoonie community, they push that you have to be your own advocate, because it's just too common that doctors don't seem to
listen to people. That neurologist I went to, I basically had to
demand that she order an MRI for me. I wanted to rule out multiple sclerosis, because my list of symptoms pointed to that being a possibility. I had to assure her that I knew it was an expensive test, I knew insurance probably wouldn't cover it and I accepted that risk. I understand that no doctor wants to do unnecessary tests and that there are risks, but in a case where you have a patient struggling with symptoms similar to something as severe as MS why wouldn't you want to rule that out? I don't know, that particular doctor made me mad anyway, I had to fight for the MRI and when I went back for her to read the results she spent more time joking about how the scan picked up my sinus infection (that I was taking care of already and was besides the point) than she did on the lack of any MS lesions on my brain or spine, she didn't even show me the scan to explain where and what made her come to the conclusion that there were no lesions, and she pushed her gastroparesis diagnosis for the last 20 minutes of the diagnosis despite my insistence that I didn't have the literal constant vomiting after every meal that sufferers of that disorder have. It's like every word out of my mouth was coming out as nothing but the jibberish like in Peanuts comics. It was after dealing with her that I decided I was done. When people say things like "I don't understand why you don't just go to a doctor, maybe they can help you out", I remind them loudly of the Neuro From Hell.
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Okay, stepping down and away from my soapbox before I start ranting about how a doctor diagnosed my father's MD as a slipped disc for years. Freaking idiot. 
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My mother had a rare blood cancer that went almost 6 months undiagnosed by doctors in her area. At first they thought it was anemia - but she was "losing" literally so much blood that she would have to get a blood transfusion to survive at least every week, and sometimes more often. They continued to shrug their shoulders, and she landed in the hospital after collapsing in the parking lot as she was heading into work, had to be life-flighted to what is now my local hospital but at the time was almost 3 hours away from us because it was so serious. She underwent a surgery and had to get a balloon (or something like that) in her leg
and her lungs because of deadly blood clots that were inches away from moving into her lungs and killing her. She died less than a year after she was finally properly diagnosed and underwent treatment and a bone marrow transplant in Chicago's Cancer Treatment Center of America. As far as I know, officially it was complications from the bone marrow transplant that killed her - but I still wonder if she'd been properly diagnosed sooner instead of doctors just shrugging their shoulders and going "I dunno" for 6 months, if she'd have survived.
By the way, I know some of you work in the medical field - trust that I know how hard your jobs are and respect you for the work you do. Like, my mom had some of the greatest nurses ever while she was fighting. But I've encountered some bad doctors, and I admit I'm still bitter and resentful about them in particular.