Meet others living with CIDP

Mark: About 15 years ago, I decided it was time to retire. I had had a long career as a control systems engineer. It was finally time to spend more time with my wife.

My wife and I love to do all kinds of activities, including lectures at local universities, art and craft programs, library events…

But then something happened that I didn't expect. I was diagnosed with CIDP, chronic inflammatory demyelinating polyneuropathy.

Mark: Back in 2016, I was on vacation with my family and friends. And it was the instant I got off the plane that I suddenly noticed I started having some strange feelings. Noticeably, it was tingling in my lower back, and like any person, I just assumed it was, uh, sat on the plane funny for too long.

So I didn't make much of it, but within a few days it started turning into tingling in my feet and tingling in my hands, and very quickly progressed to weakness, mostly in my legs.

Something was seriously wrong, and by the end of the uh.. trip, when I collapsed at the airport, uh.. I knew I had to get to a doctor very quickly.

When I got back from my trip, I saw a neurologist who misdiagnosed me with Guillain-Barré syndrome.

My doctor and I decided to start treatment and I was starting to get my strength back, but everything that touched my skin hurt.

Mark: Nearly two years later, I was on vacation again, and what happened was I started feeling the same tingling again, this time right after I got off the plane. So I knew what it was this time, having had the experience.

My first thought was “Oh, no, not again.” But I stuck it out for this trip, and by the time I got home I was already ready to go straight to the ER.

I saw a neurologist. As I learned later, he also misdiagnosed me with Guillain-Barré syndrome. After doing more research, this didn't make sense to me. So I decided to find a neurologist who specialized in neuromuscular disorders.

This decision to find a specialist was the key for me. I still have the same neurologist today. He took a look at my record and conducted some additional tests. He was then able to work out the correct diagnosis of CIDP.

Mark: So what does that mean?

It means my body's immune system views the myelin sheath that protects my nerves as an enemy and starts attacking it.

Mark: With the nerves unprotected, my reflexes are compromised, I lose muscle strength and coordination, and, of course, I have that unpleasant tingling sensation.

Mark: I've had three attacks in my life and each one was a major disruption. I was hospitalized for each attack, and even when I was released after a few days, I walked around very, very slowly and needed my wife's help getting upstairs.

The tingling and weakness had a big impact on how I felt every day. I've always been a positive person, but even I started to wonder how my life would be if the attacks continued.

I kept wondering “Is this how my life is gonna be from now on? Am I gonna get more attacks?”

Mark: So in my discussions with my neurologist, we discussed management options, including medication, uh.. potentially occupational or physical therapy, whatever else might help in the treatment of this.

I learned about plasmapheresis and corticosteroids as options for treating CIDP, as well as immunoglobulin.

Mark: After reviewing my medical history, my doctor and I decided that it would be best for me to move forward with intravenous infusions.

When I was receiving intravenous infusions, it was often hard for the nurse to find a vein. In fact, one time it took seven sticks before a vein could be found. Seven wasn't the norm, but it stood out to me.

After a while, my doctor and I reassessed and decided that, given my lifestyle and medical history, I should try out subcutaneous infusions.

So there was no more hunting for a good vein.

Mark: My doctor and I have been able to modify my management plan to try to find a good balance while still managing my CIDP. I think we finally found that balance now.

And once I found that I had a good management plan for my CIDP, I decided to take the next step and advocate for other people with conditions like this.

You need to work closely with your healthcare team and voice your needs. It might not work at first, but keep trying.

Mark: Living with CIDP can be a challenge, but it hasn't stopped me from doing the things I love.

Maddy:It wasn't until my senior year, I was running out to meet my mom in the car, I had fallen and it was just really weird because there was nothing to trip on. I was so confused at what had just happened.

The diagnosis process took what seemed like forever, and every day you’re sitting there with your thoughts saying, what is wrong with me? Why do I have this? What does this mean for the rest of my life? You know, the one question that rolls over and over is, why me?

I would tend to have some numbness in my hands. It started about pre-teens. Eventually, I couldn’t even grab a pencil, or I lost all fine motor skills. I couldn’t raise my arms past a certain point because they were so weak. I had to have a lot of assistance to move parts of my body, which I knew before I did fine.

Being diagnosed was hard to absorb. How do you go from being able to do everything by yourself to having to depend on everybody else to give you a bath, brush your teeth, feed you. That’s something that internally I did not take well. Whenever I was in a wheelchair, even though I had received my diagnosis of CIDP, I didn’t know what the future looked like.

Maddy:Having my mom take care of me was special. It’s something that I treasure in my heart. One of the moments that I’ll cherish is we went out to eat one night and she told me, because I was so frustrated in that moment of not being able to pick up a fork, and it just kind of all funneled. And I just sat there and it’s not even like a cry, it’s just tears rolling out at that moment. And she asked the waiter for the check immediately, and we got in the vehicle and she turned around and she said, “Madeline, if you want to cry, you cry. If you want to be mad, you be mad.” She allowed me that emotion that I had been holding back.

Kim:This was a true caregiving situation, and I didn’t know how we were going to handle. I just saw my daughter depleting, going down, and we didn’t know what to do. Everything just seemed to take so long, and she just kept going down, down to nothing, you know, wheelchair bound.

She was misdiagnosed with CMT, which is Charcot-Marie-Tooth disease, and somehow, that just didn’t measure up to her symptoms. So we sought out another neurologist, and she tested her, and that’s when she was diagnosed pretty much with CIDP, chronic inflammatory demyelinating polyneuropathy.

Kim:We were devastated. Was this able to be treated? And I’ll never forget, we were coming home from one of the appointments, and she said, “Mom,” she said, “you know, I feel better because at least we know I can be treated. It may not be curable, but I can be treated and live with it like it is.”

This took away some of her dreams but Madeline being the person she was, she too had to adapt and accept that maybe I need to do something else for right now until I can get to where I need to be to do what I want. She never gave up, and where she is today is because how hard she’s worked.

Maddy:Adaptability is important with this disease. You have to learn how to adapt. You want to continue your life. You want to do the things that other people are doing. There’s nothing stopping you, it’s just doing it differently. So, just because you have CIDP doesn’t separate you from everybody else.

You constantly sit there and wonder, “Why me? Why is this happening right now? And how does this look for the future?” You just take one step every single day and you don’t see your progress in that moment. But looking back now that it’s been 12 years, it’s like, oh, my gosh, I’ve come a very long way.

Maddy:A few years ago, I started asking myself, why not me? Is there anyone else out there in the world that can handle this? Yes, there are people, so don’t ask why me, why me, ask why not me?