Hi Sister Rose and welcome. I have to say that I really feel for you and have had a similar experience with my 9 yr old son. Two and a half years ago he got sick and over time developed joint pain and fatigue. He had hypermobility in some joints but very limited mobility in other joints. No one could ever quite figure out what was going on with him. He always had elevated inflammation markers (sed rate) but his ANA fluctuated between low positive and negative). He also kept getting repeated strep infections. Lupus, UCTD, JRA, and rheumatic fever were all diagnoses that were thrown around. Finally, just this month, we saw a great infectious disease doc who takes on complicated cases and he is certain that my son has a reactive arthritis as a result of his frequent strep infections over the past few years. After reading about
this kind of arthritis, it really fits with my son's symptoms so we are not treating the strep with long term antibiotics.
My advice is to either see a pediatric rheumatologist (if you haven't already) or go to a Mayo Clinic if there is one anywhere near you so that a team of doctors can go over your daughter from head to toe and they can all put their brains together on what might be going on with her. A good teaching hospital might be able to do the same thing.
I know how hard and frustrating it is, but don't give up looking for answers - you and your daugher deserve them. Like the others said, these illnesses are so hard to diagnose and can unfortunately take years to accurately diagnose.
Please feel free to ask any other questions you have. Take care and I'm glad you joined us.
Diagnosis: UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds: Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 25mg; Neurontin 200mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops
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