Robin,
yes -- I remember that you have an entire host of symptoms and you're having problems with a diagnosis. Incredibly difficult situation.
Here's a suggestion which will probably take you a great deal of time, but at least you'll feel like you've got your arms around the situation better. And, when you visit the next doc, you'll have something to show him/her.
Set up a spreadsheet for yourself -- a graph. Down the left column, list all your symptoms, test results, anything you DO know. Across the top, begin to list possibililities. They might be things that have been ruled out (although, I hate to tell you this, just because one doctor says you don't have something doesn't mean you really don't have it). Other possilibies are things you haven't been tested for, or suggestions other healthboard posters have made -- whatever.
Now go to any of the medical websites AND/OR just use your favorite search engine (google, ***, whichever) -- and begin plugging in combinations of the information you have. For each of the possibilities, input a YES or NO next to the symptom. For each of the symptoms, decide whether it's relevant to the possiblities. As you do this, you'll begin to find some new possibilities, too -- and those are things you can talk to the doctors about.
It may be an ongoing project as you continue to meet with your doctor(s) -- but hopefully you'll end up with a "bingo!" moment where it begins to come together.
Please let me know how this works. I'm working on a book now, and have provided this idea to a handful of people, all of whom have had some success with it. I hope it works for you, too.
And one other -- very random -- thought. Have you been tested for Lyme Disease? I've just read findings of some major neurological problems from tick bites that happened years ago that people weren't even aware they had gotten -- all attributed to Lyme Disease. Remember -- I am NOT a medical professional.... it's just a thought.
Keep us posted....
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