How My CIDP Diagnosis Inspired Me to Give Back

Picture, if you will, a cute elementary schoolboy, playing in the grassy field during recess in the mid-1960s. As usual, he is happy and having loads of fun! A shiny object grabs his attention, and he picks it up. It looks like a coin, but it’s like no coin he’s ever seen. It has three columns, like those seen in Italy or Greece and it’s dated 1873! I found a rare U.S. three-cent piece! This started my coin collection, now consisting of coins of all shapes and sizes from over 100 countries.

My name is Mark, and I’m sharing my story of living with several chronic immunological conditions, one being chronic inflammatory demyelinating polyneuropathy (CIDP). CIDP is a rare and chronic neurological disorder that primarily affects the arms and legs. To learn more about CIDP, visit www.knowingpn.com/cidp.

I grew up a happy kid from your typical American family, with two parents and two-and-a-half children (one of my sisters was from my mother’s previous marriage). Our whole family played games together, including board games and outdoor sports, but we especially loved playing card games. By the late 1970s, my love of games turned toward video games. In addition to collecting coins, playing card and video games, I’ve always enjoyed having fun with numbers and words. Here’s one of my favorite puns: Did you know that ten percent of all puns are funny? So I told someone ten puns, expecting that one would make them laugh. But no pun in ten did.

Being a genuine geek (or nerd, if you prefer), I had a hard time meeting women. After a few failed online dating efforts, in 2003, I decided to attempt a singles cruise. It was on that cruise — just two doors down from my cabin — that I met a woman named Laura. We were entering our cabins for the first time, at the same time. We smiled. Soon, we were going to meals, parties, and excursions together. She became my wonderful wife. We met on a cruise. We honeymooned on a cruise. I’m sure you can guess our favorite type of vacation to this day!

Fast forward to 2016. While on vacation, I felt an awful sensation. First, my feet were tingling, and soon the tingling moved into my hands, my arms, and my legs. I felt weaker and weaker. I thought that maybe I had sat funny on the plane and tweaked a muscle or a nerve. Not wanting to ruin our vacation, I pretended things were better than they were. But soon it became clear that something was seriously wrong. While walking to our boarding gate, I collapsed like a house of cards and couldn’t stand on my own.

The day after flying home I saw my doctor, who immediately referred me to the emergency room (ER), where I was misdiagnosed with Guillain-Barré syndrome (GBS). I was hospitalized for a few days, but eventually released after treatment. I started feeling stronger quickly, but before things returned to “normal,” everything that touched my skin hurt. With every step I took and with every item I touched, it felt like… you know when you hit your funny bone? That.     

Two years later while on vacation, I noticed some subtle tingling and my first thought was, “Oh no, not again!” Perhaps it was related to my increased physical activity while on vacation. Sure enough, all of those disconcerting symptoms came roaring back. Since my insurance company would not approve more of the medication I had used two years earlier, I had no choice but to return to the ER. A neurologist diagnosed me with a rare second case of GBS, which as you know by now, was not GBS at all. The tests she had run were inconclusive, So I got a third opinion, this time from a neurologist who specializes in neuromuscular disease.

This neurologist was clever enough to realize that treatments for another one of my health conditions, an immune deficiency, were “clouding” my test results. He advised that I wait until just before my next treatment for further testing, which included a nerve conduction test. The results were conclusive this time: I had CIDP.

While I was in the process of being diagnosed with CIDP, I was suffering my third attack — which was by far the worst one — but at least it had finally led to an answer. As my neurologist was explaining my diagnosis, it felt like I had finally solved a mystery. An accurate diagnosis is the first step on the road to proper disease management, and now I really felt like I had taken this step.

Even though these CIDP episodes had a huge effect on me when they were happening, I was thankfully still able to perform my day-to-day activities. I never lost the ability to drive, which is fortunate because my wife, Laura, does not like to drive.

In addition to having a fantastic doctor who I established a great connection with right off the bat, I have amazing support from Laura. She has always been there for me. When I am too weak to do something, we do it together. Even when we go to the gym or want to take our daily walk and I am feeling weak, I’ll just sit and watch Laura get her workout in. I’m really fortunate to have such an amazing wife to be there for me when I need her.

My journey with CIDP has empowered me to advocate for and educate others about neuromuscular diseases because my condition is one that not very many people know about. I’ve spoken to my senators and state representatives about these diseases and how they can affect people based on my own lived experiences. I feel like educating people about CIDP is my way of giving back to others who find themselves lost and struggling, just like I once was.     

Today, my days are filled with activities that bring me happiness and fun. My wife is so good at finding local events (one might say that she has a “rare” talent for it). Nearly every day you’ll find us attending lectures at local universities, visiting art galleries, going to pet zoos, creating beautiful crafts, and painting like famous artists. As you can see, I am living my life the way I want to live it!

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