had some similar, tho not as strong experiences...

Just prior to my emphatic onset [about 6 weeks prior] I'd had noticable vision changes which in one month changed back. Two years later, the same thing. Added to that were vision fade-outs [for want of a better description] on and off for a two year period. I'm approaching the four year mark of my 'whatever'. I had headaches, at times concurrent with IVIG, but, I'd always felt the headaches were caused by the therapy, the vision issues were often w/o the aches.

I was lucky in that I was referred to a real neuro-opthamologist. In addition to my original work-ups for diagnosing my neuropathy, I got a whole brain and cardio assessment as well. The offshoot of it all was something called a 'non-aura migraine'. Since there was no pain w/the 'events', not a whole lot to do or treat. It can and DOES tend to set off all your internal 'Red Alerts!' tho. And, it's very hard not to react in a panicy fashion...but, you HAVE to not react! By doing some breathing and visualisation techniques, it can ease the 'events' and your overall well-being a lot. Sounds silly, really, but it DOES work! All I can say is that I think I've sort of gotten a good number of those whole workovers piecemeal that folks get going to someplace like the Mayo-it just took longer?

The only think I can think of is to keep mentioning it all to your docs at each and every visit, not as a #1 concern, just one of your several ongoing issues. There will be that ONE time that it will register in your docs' minds and they will actually do something!?

Super hugs and good thoughts for the interim! - j