This morning I had a bone scan. I won’t know the results for awhile. I told the woman testing me that the last hematologist did a bone marrow biopsy and said I had some of the thickest, densest bones he had ever seen. The tech asked if I am from the northeast. Apparently there is a gene pool of folks with very dense bones in the NE. She was part of a study that scanned particular folks for that study. Cool beans. The tech says that people from that gene pool can take prednisone for years without negative affects to the bones. I hope I am one of them!
I keep thinking about how miraculous it is that I stumbled into prednisone therapy and IVIg…the very things used to make CVID better. All these years they were the two treatments that improved my life. If the third doctor in this chain agrees that the last two docs made the correct CVID diagnosis, I will FINALLY get reliable and consistent healthcare. Ah ha ha ha….sure :-p
When my mother died, she had sepsis. In other words, she was harboring head to toe infection. That fits with the genetics of CVID. Both sides of my family had autoimmune diseases. If the immunologist agrees this is CVID, that means my daughter and siblings need testing.
Even though the C in CVID stands for common, it’s a rare disease. The incidence is one out of every 25,000 people. The symbol for CVID is the zebra.
For myasthenia gravis, we are called snowflakes because we are all alike, yet very different.
So far I have only found one person with both CVID and MG. At least I am not all alone!
I came home ravenous. Here’s what I made for lunch…a bowl of turkey salad with a slab of cranberry sauce. I cut up turkey and apples and added raisins and mayonnaise. Very yummy.