I'm so sorry for your situation. While I never suffered with a "mystery illness," I have struggled with a chronic illness (Crohn's Disease), for over 15 years. Since it's not considered a rare disease, I was diagnosed within a decent timeframe; however, I DO know what it's like to suffer with intermittent severe pain and endure a fear of the unknown (as Crohn's Disease tends to run on a spectrum, whereby some people have very mild cases, while others are quite debilitated, and might need to be on high doses of steroid medication, or perhaps endure a number of corrective surgeries, in order to alleviate symptoms and/or address blockages, fistulas and/or adhesions (Yet, I feel blessed that it is rarely fatal, my looks haven't been altered, and when I'm in remission, which I do have long periods of, I have no limitations on what I can do physically.
Now, with that said (i.e., there are many of us who can empathize with you - whether or not what you have is a true "mystery" illness or not - you're NOT alone!!) there's no way that anyone on this board can help you. Even a doctor (for obvious reasons) can't diagnose anything over the internet (though he might have some IDEAS of what it COULD be), as he would have to examine you and run all sorts of appropriate tests, based on his initial review of you, in person!! But here's one idea I have for you: if you have the resources and time, and have exhausted your options at local clinics and hospitals, I would greatly urge you to travel to the Mayo Clinic in Rochester MN (it's about an 1 and 1/2 hours drive from Minneapolis). I've personally been there several times for myself, while also for other family members, who either needed a diagnosis and/or treatment for an ailment. And one of the things The Mayo Clinic is known for is being fantastic in their diagnostic abilities, in practically every specialty. They generally work in teams of surgeons, internists and any other appropriate specialist(s) that they need consult with (e.g., in your case, as another poster mentioned, probably a neurologist).
So obviously, I don't know where you live (are you even in the US?), but if you can gather the money for travel costs, they accept most insurance policies, and, obviously, out-of-pocket payment, if that's an option for you. YOUR HEALTH IS EVERYTHING, SO IF THERE'S ANYWAY THAT YOU CAN MAKE THIS HAPPEN, DO IT!!!!! Good luck and keep us posted...
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