Hi. Sorry you have been through so much for so long!
I see you are not far from where I live. Have any of your doctors mentioned Lyme Disease? It is here in CA, but most doctors are oblivious to it and don't even think of it. I went through a dozen doctors who were stumped with me. It didn't help that I tested false negative twice. I ended up testing positive at IgeneX, a specialty lab that does more advanced testing.
I finally ended up at an excellent LLMD, a Lyme Literate Medical Doctor where I was diagnosed with Lyme and Bartonella, a common coinfection of Lyme that makes the neuro and gut symptoms worse. I can help you find one if you'd like. (I drive an hour to see mine. Some people fly in to see him.)
Take a look at the symptom list in this document to see how many you have.
http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf
Many people with Lyme have MS-like symptoms and many are also misdiagnosed with Fibromyalgia due to the pain. I encourage you to look for other stories to see if it seems to fit. Also, you might want to watch "Under Our Skin," a documentary on Lyme and some of the controversy about it.
I hope you get an answer soon!
Welcome Burma57,
Limbo is not fun and I'm truly sorry you have to go thru all this especially since it's been 20+ yrs.
May the Lord bless you with answers quickly.
I can't offer much advice but I can lift these needs to the Lord and suggest that you prepare a simple time line of all that you have been thru with symptoms and w/tests, mri's, doctors etc. That will help simplify things for your new doctor.
Go in there with the expectation that you are going to get answers.
I'm also in Limbo but I've not had the long journey that you've been on.
I hope and pray we all get dx'd or answers ASAP!
Stay positive and let us know what comes of appts.
Hugs and prayers,
Tammy:)