Back in early 2018 I was suffering from a weakness that kept getting progressively worse. Dr. Mark Anderson was/is my Primary Physician. He called in a talented Rheumatologist by the name of Dr. Nada Skaf. She had me remove my shirt and I revealed an unusual redness around the neck as if I had been outside getting lots of sun in the summer. She correctly diagnosed myositis of some type. Since there are many types of myositis she proceeded to run tests to determine which one and the course of corrective action. Meanwhile I kept getting worse. After several tests and a muscle biopsy that was examined by UNMC, the biopsy was sent to Mayo. After a few weeks they identified NAM (Necrotizing Auto-Immune Myopathy), a rare muscle disease that had been found in only 300 people worldwide. NAM was caused by a rare mixture of a low-level virus and Statin drugs. Although there was no known cure, there were treatments...Dr. Scaf experimented with large amounts of steroids, Methotrexate, and other meds. In April I was given the Last Rites in the Catholic Church, and was very weak, with several liver enzymes (CK, ALT, AST, etc.) off the charts. Finally, her experiments began to bring my numbers down and back into normal ranges. Then after months of physical therapy, I regained most of my strength. I still have NAM and am likely to never completely remove it, but Dr. Scaf monitors it and keeps it in check with minimal meds. I thank Dr. Anderson for recognizing the issue and calling in a talented colleague who, with the help of Mayo solved the mystery and gave me my life back.
Patient of Mark D. Andersen, MD
