Hi Hermes,
I see you've been finding your way around and have been posting here at the PN forum.
Not sure if anyone has mentioned, but clear at top of page is a VERY helpful section called 'PN tips and resources'....it may be of great help.....at least in gaining more understanding of what you are dealing with and may help you in asking Q's at your John Hopkins appt.

I hope that appointment proves very beneficial and I wish you the best.
Please let us know what you find out k.
Others will be along for support

Glad you came over here to this forum. I saw you at the New Members Intro's several days ago.

Caring
Rae