Members from the MMN community are sharing their experiences.

Read the stories that people from the MMN community have shared, from their journey to diagnosis to their hopes for the future. Each story features the perspectives and experience of someone living with MMN.

“Experiencing progressive symptoms, watching myself get weaker, and losing muscle mass was one of the most trying experiences of my life.”

“I am living with MMN after being misdiagnosed twice with ALS. Experiencing progressive symptoms, watching myself get weaker, and losing muscle mass was one of the most trying experiences of my life.

When I finally received the MMN diagnosis, it was the first time I had ever heard of it. I was of course extremely grateful that I did not have a terminal illness but also nervous about what my MMN journey would look like and mean for me. I now volunteer with the GBS CIDP Foundation International, and getting involved has opened a whole new world to me. My journey has given me the gift of perspective and challenged me to think about what is truly important. It has not always been easy, but it has been tremendously rewarding and has given me a renewed sense of clarity.”

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“MMN is so rare…it’s a disease that doctors don’t talk about often.”

“I have MMN and am living with the numbness in my feet and up my legs. MMN is so rare…it’s a disease that doctors don’t talk about often. My numbness is not as bad as others with MMN, but I want to challenge myself to do the things that I’ve always done, like exercising. I have children and grandkids and I get around, but neuropathy holds me back. Although it pulls me down, I never let it stop me.”

”My doctors didn’t know what was going on in my body.”

“In June, I started having pain in my legs and arms, thinking it was arthritis. In July, I fell at work. I was in so much pain, in my legs and in my arms and in my head. I was in and out the hospital all last year. My doctors didn’t know what was going on in my body.”

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Members from the MMN community are sharing their experiences.

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