4 strategies for coordinating care among your CIDP team

Chronic inflammatory demyelinating polyneuropathy (CIDP) is a neurological disorder that causes inflammation and damage to the nervous system. Symptoms will vary from person to person, but can include muscle weakness, problems with balance and coordination, and sensory symptoms (such as numbness, tingling, or prickling).

Left untreated, CIDP will typically become more severe and more debilitating. The goals of treatment are to stop the disease from damaging the nerves, prevent further damage and disability, and if possible, put CIDP into remission. The main treatments for CIDP are therapies that control the disease, such as immunoglobulin infusions, corticosteroids, and plasma exchange.

Your CIDP team

People with CIDP will often work with several healthcare providers who specialize in different areas of care. Treatment for CIDP is typically overseen by a neurologist that specializes in neuromuscular disease. A primary care provider is also an essential member of a healthcare team. While a diagnosis like CIDP can feel all-encompassing at times, a person with this condition must still keep up with routine care, like screenings, vaccinations, and treatment for minor illnesses.

Additional members of a CIDP care team can include a physical therapist, occupational therapist, mental health professional, pain management specialist, social worker, and infusion specialist. A team may also include healthcare providers who specialize in the treatment of any coexisting conditions. As with any health condition, nurses play an important role in many aspects of care.

Coordinating care between healthcare providers

When you are working with multiple healthcare providers, it is important that your healthcare providers are able to share information. This is known as “care coordination.” As a person living with CIDP or a caregiver, you are an essential part of this process.

Here are four strategies that may help:

Make one healthcare provider your point person

One healthcare provider should be your designated “point person” for your medical care. A point person should have an overview of all aspects of your healthcare at all times—your CIPD diagnosis, other health conditions, all healthcare providers you work with, treatment for CIDP and other health conditions, your source for referrals.

Because CIDP requires specialized care, this is something to discuss with your neurologist. It may also be something to discuss with your primary care provider, especially if you are managing CIDP alongside any other conditions or health concerns.

Stay organized

If you are not already, start keeping a personal health record. This is a file that contains any paperwork related to your health—the results of tests and exams, prescriptions, copies of invoices, contact information for any healthcare providers you have worked with. Keeping this information—and keeping it organized—will save you time when a healthcare provider needs any of this information from you. For example, if you are referred to a specialist.

Be honest

Exams and lab tests can tell a provider a lot about your health. But your healthcare provider will rely on you for information about how you are feeling, what symptoms you are experiencing, what concerns you have, and how treatment is going.

Prepare for every appointment

Whether it is an appointment with a neurologist, physical therapist, or your primary care provider, go to an appointment prepared. Think about what you want to get from the appointment and make that your goal. Write down any questions or topics that you want to cover. Make a note to ask your healthcare provider if there is any information that they need from you.