@tom1970 @ladyaceintx1 Tom, your situation sounds just awful and no medical providers to help you! And @ladyaceintx1 , you have a new diagnosis and want more and better information. Have either of you looked into Mayo Clinic’s Care Network? It’s a group of hospitals across the county who meet the high standards that Mayo sets. In return, they have access to all that Mayo has to offer. Here is the link:
https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members
And if you are planning or hoping for an appointment at Mayo Clinic, here is the url used by those on Mayo Clinic Connect: http://mayocl.in/1mtmR63
I wish both of you good luck. If traveling is not an option, you should check into a university/ teaching or major medical center near you. And you won’t need a referral, you can just call the main number and explain the situation. That is what my husband did. I was basically non-responsive in our local ER, but my husband called and the university hospital gave me an appointment with the neuro-immunologist. But first, the university told the local doctors to start heparin so I could wake up. I’m not cured, butI’m doing well!
What do you think could happen if you make some phone calls?