It is a blow when you wait to get tests and hope they will provide a treatment for a definable problem and nothing happens. Especially when each day is a trial.
I've been there. It was hard. It takes strength and it made me strong. I can't say it will all be okay but I can say:
Things change suddenly all the time. Keep looking. Lots of Docs can't find lots of illnesses. For example if you had an insurance company pay for a lyme test it was likely a very inaccurate test. Some research has shown those tests to be wrong 50 % of the time. The ones the insurance company doesn't pay for are more accurate. Igenex Lab $250 dollars is more accurate. Or the new test that I posted on in the lyme support group. More expensive but more accurate still. About half of all people with chronic Lyme were repeatedly told they didn't have Lyme until they got too sick. With Lyme treatment delay results in the illness becoming chronic.
I hope you find a medical answer but I also hope you find the opportunity in this difficult time. I know just how hard it can be to get up and face another day. I know that things change in time. Can you find God through this. It helps a lot when you can. He is always there even when we are mad at him,