Hi Tuskgirl, and sorry to hear about your very long and painful journey… sadly nothing new with ES, but that’s no consolation!
There was a useful discussion recently about what some of the docs like to see before you go to visit them:
A CT with contrast could be useful to see if there is any vascular involvement for your peace of mind etc. as you might be having some vascular symptoms- but it seems that not all the docs need them. Hope this helps and hopefully others can chip in with this! Dr Samji and Dr Cognetti certainly seem to be the most experienced with this, so it’s good if you’re able to travel to see either of them.