Stacey, what a frustrating experience all of this must have been for you and for your daughter. It just illustrates how hard this disease is to diagnose and how a lot of docs don't really know a lot aout this disease and how it manifests itelf. I give you so much credit for standing up for your daugher and insisting that docs figure this out when it seemed like they were dropping the ball.
I'll look forward to hearing how things are going when you get back. I can relate to a lot of your story because my son was sick with a lot of autoimmune symptoms for over two years before someone was able to finally figure it out and provide a treatment plan that is actually working.
You and your daughter will be in my thoughts. Take care
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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