The story of Michael
I am fighting a debilitating rare autoimmune disease called Multifocal Motor Neuropathy (MMN). Thankfully, it is not fatal and only affects the motor nerves (limbs only). It is often misdiagnosed as ALS, which was my initial diagnosis. I am grateful that instead of preparing for death, I went for a second opinion. Â
MMN affects 0.6 in 100,000 people. As of right now it isn’t even listed on NORD. My amazing neurologist is currently working with them to get it listed. There is currently no cure, there is treatment which is IVIG; that doesn’t work for everyone. It is so rare and unknown that there isn’t any research happening in the US, and really not anything being done worldwide either.
The severity of it can range from not being able to move a few fingers to not being able to use any of your limbs. I have been hit hard by it. Right now, I am technically a quadriplegic.
While I can’t move I can use my time and energy to raise awareness about Multifocal Motor Neuropathy (MMN), and my personal battle with it. With this as my mission, I hope to help reach and inform as many people as possible about MMN, hopefully sparking interest in looking for a cure and cause. To also inspire and help others who are going through a similar situation.