hi, you need a brain MRI to rule out anything else causing the papilledema. you need a spinal tap to confirm that your intracranial pressure is elevated. I think you should have an MRV of both neck and brain in order to rule out secondary causes. they can't conclude it's from your weight without ruling out secondary causes. one of which they should investigate is obstructive sleep apnea, and also coagulation problems, autoimmune disease, and hormonal issues. not everyone gets better with weight loss: I didn't. I lost weight from being so ill after I developed symptoms of IIH, but 40 lb did nothing for me. jaw surgery put me into remission.
FYI you might want to post in "group huddle" or "women with IIH", I think that's where most people look for new messages.
I'm so sorry, I know this must be scary to be dealing with.
I saw an email yesterday, you were wondering about your username. I was out of town and couldn't respond. I hope you got that sorted out.
Deb