where to go from here.

So, i am on a quick homework break and I deiced to post real quick.
The past few days we have been looking into getting a second opinon for my weird disease.
We found a few people to talk with and sent a few emails.
The John Hopkins guy responded very quickly, and had an interest to see me. However, we came to find out he did not have must experience with EF, and was not fit for my needs.
But, we also emailed people at MAYO clinic; a very respected place.
After a few days they finally responded, with some news that straight up scared me:
They said they have NO ONE with any experience with EF( let me remind you MAYO is top 5 in the world)
but they would like me to come for 4 days of testing to try and find a cure and stay there and be treated.
Sure, i would love to come be your test rat... NOT!!!
But that scared me, what if this is my new reality. Going places and test after test being done to try and find MAYBE a cure.
Where is this heading? i am lost beyond belief.
We also talked with another person and told them what meds I have tried and failed, and he was very shocked to hear that they did not work. THAT SCARED ME TO DEATH.
I now have other doctors being surprised by me, no that is not suppose to be the case. they are the smart people.
We have also contacted my current doctor, she is helping us get the scored opinion. I am not sure if that is really good or really bad. Is she doubting her work or very confident that what she is doing it right?
Who knows at this point. I am to lost.
I just hope one day soon, I find some sort of cure or reassurance. I need that right now.

Someone the other day told me: " Bad things always happen to the good people, and nothing seems to happen to the bad. One day their day will come. I know it will"
I wait for this day, not for revenge, but so people can understand how much this truly sucks.
Yes the doctors, hospitals, needles, questions, fake conversations, all suck
but what sucks the most is the mental battle. I am lost for words to describe it.
I need a break FROM ALL OF IT.