I am a patient living with MMN and was diagnosed in early 2020 after being misdiagnosed twice with ALS. Experiencing progressive symptoms, watching myself get weaker and lose muscle mass, and then being told I have a terminal disease was one of the most trying experiences of my life. I will never forget the day that my wife and I told our three teenage daughters about my ALS diagnosis. I saw seven different neurologists before receiving the correct diagnosis of MMN. That speaks to the difficulty in diagnosing MMN and the significant progress to be made in more quickly and accurately identifying the disease in affected patients. When I finally received the MMN diagnosis, it was the first time I had ever heard of it. I was of course extremely grateful that I did not have a terminal illness but also nervous about what my MMN journey would look like and mean for me. Thankfully, I have responded very well to IVIG treatment and have regained all the strength and mobility in my affected limbs (right arm and left leg). I receive 120g of IVIG split over two days every three weeks. I transitioned to SCIG treatment in early 2023, attracted primarily by the administration flexibility. But SCIG did not provide me with same efficacy, and I switched back to IVIG a few months later. Driving almost an hour to the infusion center and spending four hours there is time-consuming, but I am extremely grateful for the access to care and treatment. As I tell my wife, I would gladly walk to the infusion center if I had to! I now volunteer with the Foundation, and getting involved has opened a whole new world to me. I lived with MMN for over three years before meeting another MMN patient. Until I met other patients, shared my journey, and
heard other patients’ journeys, I did not realize how isolating a disease MMN can be. The Foundation provides a forum for the MMN patient community to come together and serves as our voice and advocate in the broader healthcare ecosystem. In a way, going through the ALS misdiagnosis process and getting diagnosed with MMN has been a positive experience. That may sound weird, but my journey has given me the gift of perspective and challenged me to think about what it is truly important. It has not always been easy, but it has been tremendously rewarding and has given me a sense of clarity that I lacked. I am thankful for the support the Foundation has provided me, and I hope to help other MMN patients in their journey.