I will be very interested in what her journey. It sounds similar to the last few months with my daughter. A year ago (as she turned 12) she was diagnosed with Raynauds. By May she went on meds from the itching & burning sensations. The discoloration is ALWAYS there. She just has learned to live with the comments from her classmates.
Last fall she came down with what we thought was the flu. In fact, we were one of those schools that closed down for a couple of days because of the outbreak. Since then shes missed more than 3 weeks of school & like you, this doesn't include days we sent her and she stayed feeling crappy.
The symptoms seem to kept piling up. BTW - She started with the dizzy/lightheaded issues in the summer and the dr. dx'ed as side effect to her meds. Drink more water & salt everthing she wants was the result. We now have added fatigue, sore joints & muscles, zoning out/staring spells, rash on her face, headaches, cognitive issues a plenty and probably more I'm forgetting at the moment. Oh yeah - hair loss...
Her ANA was positive back with the initial Raynauds dx. So her rheumie brought up watching for Lupus a year ago. So fast forward to the last few weeks: did many "Lupus panel" blood tests which came back within normal/acceptable ranges , EEG - abnormal, possible seizure activity in left temporal lobe, Cognitive Screen/Eval - showed problems going on, MRI/MRA normal. At the time of the apt. the rheumie mumbled to us she's afraid it's lupus. After the blood work came back - "she's a puzzle."
The neurologist we saw threw out the abnormal EEG since the MRI/MRA came back normal & dx'ed the headaches as migraines. So the next visit with rheumie the dx came back as Chronic Fatigue Syndrome. Basically, because no blood work is showing damage to her body, we can't diagnose something...
Best wishes with trying to figure it out for her. That's always the most frustrating part I think. If I at least know what's going on, then I can at least go in a single direction. Auto immune issues is pretty vast and encompassing to keep trying to figure this all out.
Post Edited (Mom21girl) : 3/22/2010 5:28:28 AM (GMT-6)