Reply To: I don't know what to do.
So you reside in the Chicago area? The nearest Center of Excellence is the Mayo in Rochester, MN – about 5-6 hours drive from you. You can make an appointment at their neurology department here: 507-284-1588. Tell them you were referred by the Foundation and you are seeking an expert who can diagnose and treat MFS/CIDP.
Another option would be to contact the GBS-CIDP Foundation liaison in Chicago and seek references to knowledgeable specialists near you:
They will likely repeat some of the tests you have had, but their analysis will be more experienced based so they can help you better.
I have MFS and thought some of your symptoms could be related to MFS, especially when the face and eyes are involved. My onset was atypical too, the numbness spread from my belly (where it all started for me) down and up.
I hope you get the treatment you need right away.