Not even officially diagnosed yet but don't know what to do

MattsMomMattsMom Member
edited December 2015 in General
Hi all. I am very new to the world of lupus and would really appreciate it if I could get some advice. I have a wonderfully lively 12 year old son. Well, lively until about 2 weeks ago, then everything changed. After a week of Matthew fighting what I thought would manifest into the flu, he woke up Friday with some alarming new symptoms, prompting a trip to the ER. He has inflammation in his connective tissues and we are being referred to a rheumatologist, to test for "lupus and other autoimmune diseases". He's very tired and doesn't want to get out of bed, hasn't for over a week now, and he hurts all over. His SED rate is 42 and his muscles ache, he has pain in his kidneys area, and terrible night sweats. No rash but he has developed cold sores as of today. The ER released him with very little information and no restrictions, just to follow up with his pediatrician to get a referral to a rheumatologist for more testing. I can't get him in to see his pediatrician for another 2 weeks, then it's whatever wait until we can see the rheumatologist. I am deeply worried and not sure where to turn. I've thought about taking him to a different ER, but are they going to tell us the same thing, I don't know. Any advice anyone can give on navigating the ropes and how to relieve his discomfort while we wait would be immeasurably appreciated. Thanks

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