Patient Stories

I was born with a very mild case of cerebral palsy. It mainly affected the strength and dexterity of my right arm and leg. I was always able to compensate for it and was usually surprised when someone would ask about my limp. Fast forward many years and all of a sudden my left foot started feeling different, I was having trouble bending my toes, and I had a pronounced foot drop. Then one day I could no longer stand without having to shuffle my feet to keep my balance. (The only plus side to this is my fitness tracker started recording a lot more steps!) This inability to stand without assistance didn’t go away and I started falling, one such fall landed me in the hospital with a broken hip. So I knew that something was wrong. I went to various doctors, none of whom could figure out what was going on. No stroke, no spine issues, no irregularities in common bloodwork. Physical therapy was helping me maintain my balance/strength but I was not getting better. Finally I went for a second EMG, which if you have ever had one, you know is not something you look forward to. The doctor finished the EMG, and I will never forget him turning to my wife and me and saying, “the good news is you don’t have ALS.” That was great news; of course neither my wife nor I even thought that was a possibility, so I started to realize that whatever it was might not have an easy fix. He started to explain multifocal motor neuropathy to us and that he wanted to have me get some additional bloodwork to be sure. It took a month to get the results back. Interestingly, the GM1 antibody (which shows up at elevated levels in many people with MMN) was not detected. In my case it was the NS6S antibody. After getting the results, he called us back in and started discussing the treatment using IVIg infusions. I had my first infusion in December of 2021 and, with one exception, every three weeks after that. It has been an interesting journey. I saw an improvement after my initial loading dose. Within a month or so, I seemed to be able to stand better, my toes were bending, and my left ankle would bend easier. But then I delayed my treatment by a week. And for whatever reason I did not seem to respond as well. The areas where I had started to see improvement started to backslide. Lesson learned . . . three weeks means
three weeks! I am now almost fifteen months into infusions. I am definitely in a much better place now than I was
before I started them. I attribute this in part to the infusions but also to getting serious, again, with physical therapy. I am also making other lifestyle changes to lower my stress and anxiety on a daily basis. I still hope that I will regain more of my strength back but only time will tell. I am just so thankful that I had a doctor that recognized what this was and started my on treatment when he did.