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Possible juvenile rheumatoid arthritis

Posted by Anonymous-e55d5336 in About Kids & Teens, Nov 2, 2011

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!!


Posted by @jdouthart, Nov 10, 2011

Get a copy of the results from previous docs, and have them send all the results to mayo. My docs did lots of tests here and finally did find out what it was threw mayo clinic. try and get all your apts in two days- if they have others scheduled alot further out- then you check in with the desk- and do a checker- like stand by for a plane- but much better threw mayo. The checker system is great- i can explain more later


Posted by @jordanj, Jan 6, 2012

I am having the same problem. I'm 15 and I've been to a lot of doctors, even Childrens Mercy and now I'm going to Mayo Clinic in a few weeks. I keep getting told by doctors that it is most likely JRA, but then they do tests and find nothing. They have also considered lupus and a few others but all tests come back normal. We are lost on what to do. What were his symptoms? Just curious of anything is the same. And have you found out anything else??

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