5 things to know about your CIDP healthcare team

Chronic inflammatory demyelinating polyneuropathy (CIDP) is a rare disorder that causes damage to the peripheral nerves, or the nerves outside of the brain and spinal cord. CIDP is an immune-mediated disease, a disorder caused by abnormal activity in the immune system. The causes of CIDP are not fully understood.

As CIDP causes damage to the peripheral nerves, a person can experience muscle weakness, problems with balance and coordination, loss of fine motor skills, and symptoms such as pain, tingling, numbness, and loss of sensation. These symptoms often affect the arms and legs. Over time, these symptoms can become more severe and debilitating, especially if CIDP is untreated. CIDP can also cause complications, including life-threatening complications that affect the breathing and the heart.

The diagnosis and treatment of CIDP often involves multiple healthcare providers with different specialties, an approach known as interprofessional or multidisciplinary care. Here are five things to know about a healthcare team for CIDP.

Treatment is usually overseen by a neurologist

Neurologists are medical doctors that specialize in the treatment of disease and disorders that affect the nervous system. Neurologists further specialize into specific types of diseases and disorders that affect the nervous system. Treatment for CIDP is ideally overseen by a neurologist who specializes in neuromuscular disorders, disorders that affect communication between nerves and muscles.

With treatment, many people are able to achieve remission. This means that the disease is controlled and inactive. Therapies that control the disease—immunoglobulin infusions, plasma exchange, and corticosteroids—are the main treatments. Because these therapies act on the immune system, treatment decisions should involve a discussion of side effects and how a person will be monitored for side effects during treatment.

Treatment often includes physical medicine

Also known as physiatry and PM&R, physical medicine and rehabilitation is another important area of treatment for CIDP. Physical medicine and rehabilitation is a medical specialty that helps people maintain function, regain function, or adapt to physical limitations. For a person with CIDP, this can help improve strength, mobility, balance, coordination, and quality of life.

A physical medicine and rehabilitation team can include medical doctors who specialize in physical medicine, along with other types of healthcare providers. The providers a person works with will depend on their individual needs. Physical therapy and occupational therapy are frequently a part of treatment. People with CIDP may also work with pain management specialists, registered dietitians, and ENT specialists.

There are professionals who can help you navigate the healthcare system

Navigating the healthcare system can be one of the most difficult aspects of living with a chronic health condition that requires treatment from multiple healthcare providers. Case managers, care coordinators, and social workers are professionals who help people with medical conditions navigate the healthcare system. Communication with a healthcare team, advocacy, accessing resources, and navigating insurance approvals are examples of things that these professionals can guide you through.

Primary care providers play an important role

Many people with CIDP first meet with a primary care provider to discuss their symptoms before being referred to a specialist. While treatment for CIDP will be overseen by neurologists or other specialists, a primary care provider will often continue to be an important part of a healthcare team.

A primary care provider can play an important role in monitoring for side effects from CIDP therapies, and care should be coordinated among a primary care provider and the other members of a healthcare team

Aspects of primary care like vaccinations, tests for blood pressure and glucose, and treatment for coexisting health conditions are all important to the health of a person with CIDP.

A mental health professional can be a good addition to a team

Living with CIDP is challenging. For many people, diagnosis is a long and frustrating process. Medical therapies and physical medicine are time consuming. Symptoms like fatigue and loss of ability are frustrating. People with CIDP must cope with uncertainty about things like treatment side effects and disease progression.

It’s important to recognize that CIDP can affect mental health. Consider working with a mental health professional. If you are experiencing low moods, are under a lot of stress, or are having a difficult time coping with CIDP, talk to your healthcare providers.

While treatment for CIDP has specific goals like controlling disease activity and maintaining function, the overall goal is to allow a person with CIDP to enjoy the best quality of life possible.