Patient Stories

Looking back, there were signs… My energy was not what it once was, I was tripping frequently, I was feeling tingling in my toes, and my legs began to feel heavy after walking for a while. But it was nothing that was slowing me down. As many moms will attest, we’re the last ones to worry about ourselves. I kept telling myself it must be a pinched nerve in my back, or I was just clumsy and getting older. I did not even think twice when I broke my leg while at my son’s basketball tryouts. My left ankle rolled when I was coming down the bleacher steps and I went down… and not on my feet!

In 2012, things really began escalating for me and I started noticing some major changes in my legs. I was tripping a lot more now, I began limping, and the toes on my left foot had no range of motion. Also, my legs were constantly cramping, I had a lot of muscle twitching, and I was tired all the time. My legs felt really heavy after walking about 50 feet, like when you are walking in the ocean, and you struggle to put one foot in front of the other. I would have to stop and wait a few minutes before I could continue forward.

Then in September of that year, I went with my husband on his annual work trip to Nashville. I was walking through the hotel lobby to meet him at a cocktail party, feeling very put together and excited for the chance to trade out my jeans and flip-flops for a dress and fancy heels. All of a sudden, I felt some tingling in my left foot. Then I couldn’t feel my foot at all and I went down hard. I was mortified that I had just fallen in the most ungraceful way in the middle of the hotel lobby in a dress! I took my shoes off and struggled to stand up. I stood there hoping no one noticed and feeling very grateful a large plant had blocked my swan dive to the floor! I walked barefoot to the cocktail party, put my shoes back on, and clung to my husband for the rest of the night because I felt so unsteady Something was really wrong.

In January, I finally got myself to my family doctor. The first step was to get an MRI. When that came back normal, my doctor sent me to a local neurologist and after an initial evaluation, he brought me back in for a nerve conduction study. I laid on my stomach as needles were placed in different spots on my legs while I flexed or tensed various muscles for an hour. It was very painful! My husband was holding my hand and I think I almost broke his fingers from squeezing them so hard. My results came back, and they were a bit confusing because I was not fitting into any one box neatly. I was referred to a neuromuscular neurologist and had to wait another three months for my appointment.

That appointment was an all-day event, and by then, my legs were so weak that it was a struggle to walk more than 10-15 feet without having to stop and rest. I was given another evaluation, blood work, a urine test, a breathing test, and another nerve conduction study that was thankfully much shorter and less painful than the previous time. As I lay in the hospital bed, the doctor told me everything was pointing to ALS, a fatal neurodegenerative disease. My ears started ringing; I looked at my husband who was also in shock, and I burst into tears. My neurologist assured me we were in this together and he would get me on the fast track for further testing. As upset as I was, hearing his words of support meant everything to me at that moment.

I don’t remember much after that besides going through the motions of scheduling another MRI, a CT scan, more blood work, and a lumbar puncture. I remember a quiet drive home; it was a beautiful sunny day and I felt numb. My sons were both in high school at the time—they were all I could think about. I didn’t know what to tell them. Would I be around to see them graduate, get married, have kids? I was terrified. Over the next several months, I went back and forth between neurologists. When my husband and I went to my local neurologist to get the test results from my lumbar puncture, he told us everything came back normal, which pointed to an ALS diagnosis. I asked, ‘What should we do now?’ He said, “You can get a second opinion if you want, but I would get your affairs in order and travel sooner than later.” Then, he just got up and left the room. I was stunned. When we needed support and guidance and advice the most, I felt like we were abandoned.

As we walked back to our car, I noticed Michael was not next to me. I turned around to look for him and my very strong, stoic, military officer husband was just standing there looking at me. He was visibly upset in a way I had never seen before. I could see how much he wanted to fix everything, and how helpless he felt to protect me or help me. Through this whole process, he kept telling me, “Let’s not worry until we have something to worry about.” Well, now we did. I don’t know how long we stood in the parking lot holding each other; he was trying to process everything, and I was thinking of where I could leave the worst review possible for this neurologist who had just made my husband cry! Throughout this journey, I have realized how important it is to find a healthcare team that is willing to counsel and listen to their patients.

Needless to say, we never went back to that neurologist again. From that point on and for the next eight years until he retired, my neuromuscular neurologist became my primary doctor. I was getting ready to start a medication for ALS, but my neurologist decided that he wanted me to hold off and get a genetic test for ALS. That was a long 30 days waiting for my results. I was so worried about the possibility of passing this on to my kids. Thankfully it came back negative! At my next visit, my neurologist asked if I was up for trying one more thing: a plasma-based treatment called IVIG. Well of course I was, I would have tried anything at that point! We discussed the important safety information, including potential side effects, and we chose to move forward. I was set up for an IVIG loading dose and three regular IVIG doses before coming back to see him.

Halfway through my loading dose, I was at the market with my husband walking behind him and he turned to me and said, “I don’t hear you coming.”

My dropped foot was usually pretty noisy hitting the floor. This was a good sign! When we went back to see my neurologist, he confirmed that I did not have ALS. Instead, he explained that I had a very rare autoimmune disease that I had never heard of before called MMN or Multifocal Motor Neuropathy. MMN only affects 1 in 100,000 people! While I felt so relieved that it wasn’t ALS, I thought, MMN, now what? Will I end up in a wheelchair? I didn’t know what to expect for the rest of my life.

To understand my MMN journey after diagnosis, I need to get a little personal. I had a very complicated childhood. As a young woman, I did not have a lot of confidence or self-worth and that led me to make some very unhealthy relationship choices where I ended up being the survivor of abuse. Somehow, I was able to find the strength to get myself out, get help, and move forward. I will always be very proud of myself for that.

When I was 29, I met my wonderful husband Michael, and he gave me the life I had always dreamed of. One of the happiest moments of my life was when I got pregnant with my oldest son Jack. Michael was in the Air Force, and we moved around a lot. I was fortunate to be able to stay home and focus on being a mom and a military wife. Twenty months later I had my youngest son, Grant. My two boys are my heart, and I gave them everything I wished I had gotten growing up. I was going to be SuperMom whether they liked it or not! Even with this wonderful life, because of my past, I struggled with anxiety and depression. Even when everything was going right, I always feared my happiness would be taken away. And with my diagnosis, it seemed like my fears were coming true.

The next few years after my MMN diagnosis were a roller coaster. My strength was up and down, I was exhausted all the time, and I had to wear a leg brace for my drop foot. I was scared to leave the house by myself, I shut out family and friends, and I stopped doing all the things I loved. As a mom and a wife, I felt so much guilt. I was used to taking care of my family. I needed to feel needed, to have purpose—and now they were the ones taking care of me. It was hard for me to ask for help because, in my mind, asking for help meant that I was weak—and I didn’t want to feel weak. Everything just felt overwhelming.

One time, I sat on my closet floor in tears as I loaded up all the heels I could no longer wear. Another time, while shoe shopping, out of pure frustration, I actually threw a shoe I was trying on at my husband when he suggested that I might be overreacting about not being able to find fashionable shoes that worked with my leg brace. Not a proud moment for me. Getting upset about shoes might seem a bit trivial in the grand scheme of things, but it was just one more thing on a very large mountain of things I was trying to deal with.

One day when I was at my worst, I told my husband I would understand if he wanted to leave me; this was not what he signed up for and it wasn’t fair to him. He looked at me like I was crazy and told me he would take me any way he could have me. In that moment, I finally understood…that man REALLY loved me!

When you’re a survivor of abuse, you crave control, because when you are in control, you feel safe. With MMN, my world was spinning out of control…all those feelings I thought I had put to rest a long time ago came bubbling back up. My husband very gently suggested that I might want to go back to therapy, and I agreed; he was right. With my therapist’s help, I realized MMN was out of my control, but how I handled it was something I could control. She helped me understand that this was like a grieving process. I was grieving the loss of the life I thought I would have, but my new normal could be just as wonderful. Therapy helped me bring back into focus how much I still had to be grateful for and it reminded me that I was a survivor.

Over time, I began to realize that MMN was just a part of me; it did not define me. I was going to live my life on my terms and choose to be positive. I also realized that I wasn’t alone. I found an MMN group on social media and reached out to GBS CIDP Foundation International and started to get involved. Through the foundation, I had the privilege of becoming an MMN liaison and speaking with newly diagnosed patients who were understandably scared. I didn’t want anyone to feel like I did those first few years. One of my favorite quotes is, “Your story can be someone else’s survival guide,” and I believe that. Today, I am very proud to be a board member at the GBS/CIDP Foundation International and I love being involved in the great work they do, even if it’s just in a small way.

Today, I feel like I’m in a good place mentally, emotionally, and physically. I’ve been working with my neurologist to stay on top of treatments that work best for me, and I feel stronger now than when I was first diagnosed. Do I have bad days? Of course! I even have bad weeks and sometimes a bad month. But I choose to look at MMN as my new purpose. I was given this for a reason. I have learned not to take anything for granted and to take advantage of what life sends my way.

I would like to take a second to acknowledge and thank my husband Michael, and really all the caregivers out there. He is and always has been my greatest champion and has loved me through every step of this crazy journey. Do you know he has not missed one doctor’s appointment in 10 years? Not one. Caregivers don’t get enough credit for all the unseen things they do nor do they always get the support they need. When you get something like MMN, it affects the whole family. I hope everyone is lucky enough to have a Michael in their life.