How much more does she need to go through to get a diagnosis?

I have a 23 month old daughter, who has fevers every 2 weeks that average out into the 105's. She seems to have a lot of stomach pain or even leg??? With all her dr visits and hospital stays,no joint or lymph node swelling is obvious or rash. My daughter has been unofficially been diagnost with periodic fever syndrome. They are slowly trying to rule out forms. A blood test just came back saying she doesn't have FMF, but the doctors are leaning towards PFAPA or HIDS. She has one dr appt a week and under the care of 7 different doctors, as they keep referring her out. She has two blood draws a week and sometimes even more. The Children's Hospital says its going to take several more months. I just know why its taking so long. She is in pain during these episodes and they come so quick that there isn't a lot of time for her to recover in between them. Is this what everyone else is going through? Did it take you over a year to get a diagnosis? Any advise? Should I fly to a better hospital or doctor? Help......