I have a question (probably many!). My son has been tested for MD and Rheumatoid Arthritis. The ped neuro was convinced he has MD, but then the tests came back in the normal range. Same thing with RA, but tests came back in normal range. Now, the pediatrician has stated if you really want to find out what it is, go to Mayo Clinic, and they will set up the referral.
My question– how does this work?? Do they normally start over with dx testing? Do you have an idea beforehand of how long you are going to be there??
I am just frustrated. I feel like I have had to navigate this entire system myself for 13 years—- I wish someone would just say “I am going to help you figure this out.” But then again, I hate to put my son through a lot of dx testing, again, for something that has already been done. Any thoughts would be appreciated!!