Rather than attack the motor nerves of my arms, MMN presented in what seems to be a pretty rare form. Starting 7 years ago, one after another, 9 months apart, my 2 phrenic nerves demyelinated and shut down. Their work was to trigger the two diaphragm halves and keep me breathing. I now largely breathe using accessory muscles.
MMN showed up 7 years ago in the form of raging pneumonia that had spilled over into the pleural cavity, sent me to a regional hospital for 3 weeks and thoracic surgery. After 3 years of treatment/monitoring at Penn Med, they were not able to come up with a diagnosis. A Penn doc suggested the neurologists at Columbia University: soon after a huge host of blood testing, EMG and muscle conductivity studies, MMN was diagnosed at Columbia. IVIg commenced with Gammagard at 42.5g every two weeks. 3 years later, the dosage is 65g, and the interval remains every two weeks.
Given that the phrenic nerve failure version of MMN is quite unusual, I hope to hear what other longer term MMNers have experienced in terms of progression (if any) to systems beyond the phrenics, fasciculations, longer term response to IVIg in terms of what it is or is not accomplishing etc. I am hoping to get any feedback that will assist me in peering a bit into the future.
Kim Day (male)