Living with Multifocal Motor Neuropathy (MMN)
It's important to remember that while living with MMN may feel overwhelming, you are not alone and MMN doesn't define you.
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Living With MMN
Working with your MMN healthcare team
To make the most of life with
MMN
Multifocal Motor Neuropathy (MMN)
(how to say it: muhl-tee-FOE-kuhl MOE-tur nur-AH-puh-thee)
Definition:
A rare medical disorder in which nerves that control muscles are attacked by the body's immune system.
See more glossary terms
, it’s important to have a support system. This includes building a team of healthcare professionals that’s right for you and your needs.
A healthcare team for patients with MMN may include the following specialists:
- Neurologist
- Psychologist or mental healthcare professional
- Physical therapist
- Occupational therapist
- Dietitian
Communicate with your team on a regular basis
Your MMN management plan might change over time, depending on your symptoms and current needs. It’s a good idea to have ongoing conversations with your healthcare team about what’s working for you, as well as what’s not working.
Keep your doctor up to date on your symptoms and how you feel while taking your medication. Your doctor will work with you to make any needed adjustments, and it's important not to stop your treatment on your own.
If a dietitian is part of your healthcare team, work with them to make a healthy diet that works for you
Although there’s no official diet recommended for MMN, a healthy lifestyle is good for overall well-being. Consider talking with your healthcare specialists about possible adjustments to your diet that may be beneficial.
Living with MMN
Jen: My world was turned upside down in a matter of seconds.
Simple, everyday tasks have become very challenging. There's days where a shoe might have worked the day before and I can't put it on that day, and I've chucked it across the room out of frustration, and I've cried and I've had my pity party.
The most frustrating thing about MMN is, I can't walk normally. I can't run. I can't do things that I loved doing—that I had a passion for. And now I have to find a new passion—a new way to do things.
You're still normal, but you have a new normal. And I had to come to terms with that. I just suck it up and say, "Okay, figure out a way to do this. You're gonna get this. You're going to do it."
I was very lucky to find an MMN social media group. They get it. They get me, we get each other. They are my MMN warrior family.
I also talk to my doctor frequently about how I'm doing. He isn't a mind reader, so I need to advocate for myself to ensure I'm getting the care I need to manage my MMN.
MMN has taught me to not take life for granted. I truly appreciate what I can do. I'm grateful for the things I can do in my new normal.
Running errands
Cooking or doing housework
Driving you to and from appointments
Providing emotional support
Being an exercise partner
Emotional well-being with MMN
Living with a chronic medical condition may feel stressful some days. Ongoing stress can have a negative effect on health. That’s why taking care of your emotional well-being should be an essential part of living with MMN.
Find peers who
understand what you’re
going through
Consider joining a support system of peers who know what it’s like to have MMN or a similar medical condition.
- You may find it helpful to read others’ MMN stories in an online community or forum.
- You also may benefit from talking about your experiences in a support group.
Some options: The GBS CIDP Foundation and the Neuropathy Action Foundation have information on how to find a support group for people with neuropathy.
Prioritize your mental
health
If you have MMN, you and your loved ones may benefit from activities for emotional well-being.
- Mindfulness exercises or speaking with a therapist are a few options to consider. Your doctor may have a referral for therapists who specialize in working with people who have chronic conditions.
- Mindfulness-based techniques can help with processing emotions and reducing overall stress levels for patients and caregivers. It also may be beneficial for physical symptoms if you're experiencing
fatigue
Fatigue
(how to say it: fuh-TEEG)
Definition:
Extreme tiredness caused by illness or excessive activity. See more glossary terms
.
Speak up and advocate
for yourself
Have open and honest conversations with your healthcare team about your concerns if something isn't working. Together you can figure out what changes can be made to your management plan.
KNOW
THAT MMN is manageable
Did you know there are treatment options for people living with MMN? Consider talking to your doctor about developing a management plan specifically for you and your needs.
LEARN ABOUTMANAGING MMN
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