January 12, 2024—Multifocal motor neuropathy (MMN) and chronic inflammatory demyelinating polyradiculoneuropathy (CIDP) are rare neuromuscular diseases. People living with CIDP and MMN experience muscle weakness and sometimes sensory loss. 

Researchers are currently trying to learn more about these conditions. A recent study of people with CIDP and MMN showed patients experience challenges from diagnosis to treatment. Most are dissatisfied with current treatment options. People living with CIDP and MMN would also like to see more education for clinicians on these conditions. 

Are you living with CIDP or MMN? Join the Inspire community for peripheral neuropathy, a common issue impacting those living with these conditions.

Here are the top findings from the study.

1. People with CIDP/MMN often face struggles when searching for a diagnosis

Loss of balance, muscle spasms, and weakness in hands and feet are usually the first symptoms that cause patients to visit a doctor.

Delayed or inaccurate diagnoses are common. For many, getting a diagnosis took more than a year. It also involved extensive testing, such as bloodwork, EMG, nerve conduction studies, strength tests, CT scans, and MRIs.

Patients felt that their symptoms were sometimes dismissed. This led to frustration and mistrust in the healthcare system.

2. Seeking information from multiple sources is common

Despite receiving education from neurologists, patients felt that neurologists lacked awareness of the presenting features of MMN and CIDP. 

Patients turned to online sources, support groups, and foundations for additional information.

3. These conditions have a major impact on quality of life 

People living with CIDP/MMN said they face challenges in their daily lives because of their conditions. Patients often have unpredictable symptoms. They can experience a loss of fine motor skills and find it harder to get around. Fatigue is also common. 

People reported that they had to make adjustments to daily life, work, and social activities as a result of their CIDP/MMN. As one CIDP patient shared, “Frustrating things are opening a jar or something of that sort. It’s humbling to need to ask someone for assistance to do the menial task that you never gave a second thought about prior.”

4. Patients explore symptom relief outside of immunoglobulin therapy

People living with CIDP/MMN receive intravenous immunoglobulin (IVIG) therapy, either at home or at an infusion center. All patients reported that they needed some adjustments to their IVIG therapy regimen to better manage their symptoms.

However, most patients still wanted more treatment options. In addition to seeing a neurologist, many also saw a physical or occupational therapist, chiropractor, or massage therapist. About half of patients also visited a mental health professional for help with depression and/or anxiety.

5. People with CIDP/MMN would like to see better clinician education and more educational materials for patients

Patients say they actively participate in treatment decisions and advocate for themselves with their providers. However, people living with CIDP/MMN reported that improved clinician education is needed. As one MMN patient shared, “My group now consists of physical therapy, which is very difficult to find someone who understands MMN.”

People living with CIDP/MMN also noticed a lack of educational materials about their conditions: “There was nothing that they could give me to walk away with to read,” explained one MMN patient. 

About the study

This study was conducted between March and April 2023. A total of 10 patients living with CIDP and MMN participated in semi-structured interviews. The findings were presented at the Ig National Society conference in October, 2023. 

Help advance CIDP and MMN research

If you would like to take part in future CIDP and MMN studies, join the Inspire community for CIDP and MMN.