Oh sorry, I didn't get the full scope. It just sounded so similar for a second there.
I hear you on the doctors. I saw 30+ before they finally looked at my MRI, and that guy explained the condition wrong to me and wanted to do a procedure that could paralyze me and would never help!
I do understand the invisible disease, I have started to get horrible pain in my muscles, as if I have lava going through my whole body and still people shrug it off.
Maybe you need a new doctor? Someone should do simple tests for you like do an MRI! That's unacceptable, but like I said, I know that whole war.
I hope you find something better and they figure this out. Do you have to get a referral because of your insurance? If not do some searching and tell them you are having some serious pain issues and you need to see someone (pain clinic), sometimes they will see you. Try asking for the nurse, not the person in the front. The neuro usually does require a referral, but not always. Tell them you are having these symptoms and you don't really have a PCP. Get your foot through the door.
I have e-mailed doctors in the past! Actually that's how I found my neurosurgeon. I ended up getting in ASAP vs. having to wait 3 months because he liked me and knew who I was (through e-mails). You can look on their websites and most have e-mails for contact.
Worst case scenario, make it known to your physician that you need all copies of your medical records because you need to find a new doctor! Remember you are paying him!