I will definitely be taking her to the best I can find. I am pretty sure they won't be able to do anything though. They checked me up and down and can only come up with meds to mask the pain and symptoms.
My poor little girl couldn't empty her bladder last night. She has had this occur several times of which I hoped were all coincidentally similar to my problems.

All of our symptoms are neurological.
It was extremely upsetting to me, especially after seeing her blood tests, but I just told her it was ok and tried to keep smiling as I try to do when either of them tell me about the tingling or other issues. Then I put her in the bath and she thought she was peeing. Her legs were tired and "bothering" her and she felt hot and cold at the same time. This is just maddening that no one can figure this out.
I contacted John Hopkins, so waiting to hear what they say.