My sister is in the process of being diagnosed and we are totally overwhelmed. Her main symptom has been problems with her eyes (red, irritated, inflamed etc.). After some blood tests, her specialist (a fancy eye doctor... his exact title I cannot remember) tentatively diagnosed WG and ordered a chest/sinus CT scan and more blood tests. While waiting for the insurance company to authorize the CT scans, the blood tests have come back with further confirmation of active WG. We are returning to him on Thursday to hear the next steps. I have several questions:

--He is a an eye specialist... are others treated by eye doctors if that's where their symptoms first present?
--I think he's a good doctor but he's 2 hours away. (He's in Boston, we're in Western MA). He mentioned infusions... Would it be better to try to find someone closer to home who may not be such an expert or go to someone expert but inconveniently located?
--Have others gone the infusion route? If so, could you (briefly) describe the process? How many over what period of time...

We'd appreciate any words of encouragement or wisdom. I can relate in some ways as I have Crohn's, Psoriasis , and now PCOS, but WG is a whole new world. I started reading information online and found it completely scary and overwhelming!

Thanks,
Stacey
Western MA