Living with Multifocal Motor Neuropathy

Music has a strange power. It lets you live in the moment. When music is happening, there’s nothing else in the world going on.

From an early age, I knew music was going to be my career. When I was 19, I began taking lessons on the double bass. I got to the point where I was playing pretty difficult sonatas and orchestral pieces.

In the Spring of 2007, I noticed that my pinky was having trouble moving when I was in the middle of my bass practice sessions. And that scared me.

November of 2007, I started running again, and then I noticed something was off with my legs. It felt like I was running through water—like my legs were extra heavy.

I wasn’t myself anymore. I didn’t know who I was.

I stopped playing the upright bass. My hand was weak all the time.

And at that point, music just reminded me of everything I had taken away from me. So, I stopped pursuing music for a while.

I’d had enough of whatever was going on, so I went to go see the doctor and ended up going to see many doctors and had many different tests done.

I was told that it could be MS or ALS, which is a motor neuron disease.

The only thing going through my mind at that point was panic. I pretty much lost all hope.

My mother came to the rescue. She made an appointment with a new neurologist.

In July of 2008, I went to see a new physician, went through more testing, and the doctor told me that he thought I might have multifocal motor neuropathy or MMN.

I had no idea what this was. No one I knew had heard of this either.

I later learned that it’s a progressive disease that affects your body’s motor nerves, which control your muscles.

I started treatment but had to stop because of issues with my insurance.

In 2010, the doctors found a conduction block, which confirmed my diagnosis of multifocal motor neuropathy.

And soon after this, I started treatment with GAMMAGARD LIQUID.

My doctor told me that GAMMAGARD LIQUID is an infusion that’s given by a healthcare professional at home or at a local infusion center.

He said it could help increase my strength and dexterity, which would help me with everyday activities.

After weighing the benefits and the risks my doctor and I decided that GAMMAGARD LIQUID would be a good option for me.

The infusions can take a few hours, so I use that time to listen to an audio book, catch up on the news, or catch up with the staff at the infusion center.

Infusions can sometimes give me a headache, muscle aches, fatigue...

My symptoms have improved since being on GAMMAGARD LIQUID.

Before treatment, my thumb was completely paralyzed to make a thumbs up. You don’t realize how much you need your thumbs up until you lose it. My thumb came back. One day I was just playing on my phone, and it just started to work again. That was an amazing moment, and I was confident that GAMMAGARD LIQUID was working for me. This is just my experience. Yours might be different.

I meet with my neurologist once every six months. Every time I see him, he tests the strength in a whole bunch of my muscles. We discuss any other issues I might be having.

Knowing that this is a progressive disease is not easy to think about. I have problems writing with a pen or pencil. It’s difficult for me to go up and down the stairs, because of the weakness in my legs.

I joined a social media group for people who have MMN, and it’s been a wonderful experience to connect with people who are going through the same problems, and just having somebody to talk to who really understands what you’re going through.

My friends and family help me with the things that I can’t do myself. I’m very grateful that I have a good support system.

If I could give any advice to someone who’s been newly diagnosed with MMN, it would be, be your own advocate.

I try to stay positive by exercising, setting goals for myself, and continuing my career in music. Although this condition stopped me from playing bass, it wasn’t gonna stop my love and passion for music. I work as a voice teacher and as a deejay. I couldn’t think of two jobs I would like to do more than the ones I have.

You might lose the ability to do things you loved to do, but don’t be afraid to find new things that you love to do.

Don’t let MMN put you in a corner. You can live with this disease and be successful.