So, I had put together a long post but then what I thought changed… So the hematologist had to back off of the CVID diagnosis. One of the tests took weeks to be conclusive. The “provocative” test consisted of immunizing me for a certain virus and then checking to see how my body responded. So after weeks the tests were in, and my body was producing anti-bodies so no CVID. Ugggh so back to square one. Well the hematologist, still very confident of his diagnosis, referred me to an Allergist/Immunologist.
In the meantime, no Prednisone, I was really back to square one.
I see the allergist/immunologist, go over the lengthy history (at this point I am having a hard time remembering when things happened and what order they came in). His affiliation with both Cleveland Clinic as well as University Hospital he had access to both sources of doctor reports and testing results. A few questions and we were back down the CVID route. Another series of blood draws. Followed up in two weeks and he feels CVID is confirmed and wants the IVIG infusion (can’t call it treatment as it is more like maintenance/preventative measures) resumed.
So the takeaway was I have CVID. Most people with CVID present with chronic infections, then there is the 7% like me that in general do not present with obvious conditions. So the upside is I am not chronically ill, the downside is I can suffer surprise attacks like the DIC episode as well as the recent ITP and possibly the Transverse Myelitis.