Patient Stories

The life I thought I was going to have was just that beginning in 2012. Being an athlete, I always took pride in keeping in shape. I was a concrete finisher by trade and exercised regularly. Running several miles once a week was part of my routine. Sports was one of my passions and played them just as well at age 55 as I did when I was 21. My job, golf, fishing with my children and wonderful wife, landscaping our yard, concerts, ball games, vacations were some of the things I loved doing. In 2012 that would all change. I was losing strength in my hands and arms making me unable to perform the physical demands my job requires. That began the financial strain on our marriage. In the meantime, I picked up a $9.00 an hour part time job at a Home Depot. By 2013, I began to lose weight and muscle mass in my legs. Out jogging I stumbled and fell. Something was seriously wrong. Went to my PCP and he referred me to a neurologist. Neurologist was determined to figure out what I had, so we started tests. After five years of multiple CT scans, MRI’S, EMGs, and so many labs I felt like a pin cushion. Tried Celcept, steroids, and even a couple months of IVIG but he wasn’t satisfied with the results. 

By 2018 my strength had deteriorated to that of an infant. My neurologist finally threw in the towel and told us everything points to ALS and suggested getting our affairs in order and plan some vacations. He referred us to a second opinion and walked out. My wife and I went out to the car, held each other, and cried. This wonderful woman stood by me every step of the way. Every test, every appointment, every lab. I cried for her. We had to wait 3 months to see an ALS/neurologist at Northwestern Hospital in Chicago and after one nerve conduction study he said you don’t have ALS, you have MMN. 

There’s no cure but there is treatment that can help you function. I started IVIG early 2019 and gradually began to gain weight and strength. The ability to walk without holding onto something or someone. Golf is back in my life. Exercise. Coaching baseball. I can get through an airport without a wheelchair. In November 2023 I started subcutaneous infusion every week instead of IVIG two days in a row once a month. The strength of a 12-year-old, I’ll take it. This journey has been an emotional rollercoaster. The uncertainty, anxiety, depression. I’m now getting help coping. Unfortunate? Not advocating myself and addressing mental health with the 7 neurologist’s I’ve seen. Losing the love of my life through divorce in 2022. My emotions were her emotions. I failed to realize that and give her the affection she longed for. Fortunate? Still have a daughter, son, three adorable granddaughters, a great family, and friends. Advice? Focus on the fortunate!