Jen’s story

Jen leads an international support group for people living with MMN

For Jen, one of the worst parts about being diagnosed with MMN was the feeling of being alone. Even doctors didn’t understand the disease. So she started searching for others with MMN and bringing them together.

How did your journey with MMN begin?

I had difficulties moving my right leg and foot. During yoga class, my leg would just cramp up really painfully and then it was my ankle. I was out with the girls and I’m in my high heels and my ankle just gives out. I kept brushing off all these symptoms. I didn’t realize my toes were becoming paralyzed.

“The first neurologist I saw said ‘Hey, I’m not comfortable diagnosing you because what I think is going on is something I’ve only read about in textbooks.’”

What was it like getting a diagnosis?

The first neurologist I saw said ‘Hey, I’m not comfortable diagnosing you because what I think is going on is something I’ve only read about in textbooks.’ The second neurologist I saw said I have what’s called multifocal motor neuropathy. And he says, ‘I can’t tell you what you’re going to be like one year from now. I can’t tell you what you’re going to be like 5 years from now. You might be in a wheelchair.’ I asked: how long am I going to have to have this? And he said, probably for the rest of your life.

What made you decide to start a group for others with MMN?

It’s so scary to be hearing all of these things, watching your body respond and not respond to treatments, and trying to get answers. Nobody has an answer. They can’t tell you why it started. So I started digging in and trying to help myself. I started my own MMN support group for people who wanted information and support and to not feel scared to talk. I probably have 400 people now. We can talk to each other and help each other and find common ground. I search the world over and I look for people discussing MMN, and I invite them because I don’t want them to feel alone.

What advice do you give others?

I am the number one advocate for myself and I tell everybody to tell their doctors ‘no’ when you don’t agree with them. You need to be your number one advocate. If you are not getting the answers you need, you deserve to find someone else because this is such an ultra rare autoimmune disease. I have advice for people who don’t have a rare disease, too. I used to say I don’t like running. Then MMN took away my ability to run. I used to be hard on myself over the way I looked, instead of loving my body and who I am. I want people to appreciate what they have.

“MMN is not fun. But I feel good that I get to help other people. And I think when I’m helping other people, it makes me stronger.”

What are your goals going forward?

I try to stay as positive as possible. Some days aren’t so easy. I live in a fourth floor walkup. I don’t have an elevator. I own my apartment and I was healthy before I bought it. But I’ve learned how to do things differently so that I can still live in New York City, because I don’t want to give in to MMN. You don’t know what your future’s going to be like. This isn’t like you break a bone, you get surgery, you put it back together. We have an autoimmune disease that someone doesn’t have answers to and we have to build our own answers. And my answer is going to be, ‘I will run again one day.’ I will be the one who helps people and doctors understand how this started.