CIDP: coping with a misdiagnosis

Chronic inflammatory demyelinating polyneuropathy (CIDP) is a rare disorder that causes damage to the peripheral nerves. The peripheral nerves are the nerves outside of the brain and spinal cord (which are known as the central nervous system). Common symptoms include muscle weakness, problems with balance and coordination, loss of fine motor skills, numbness, and sensations like pain and tingling.

It's common for people with CIDP to spend a year or several years experiencing symptoms before they receive an accurate diagnosis. Misdiagnosis is also common. There is no single test that can diagnose CIDP, and symptoms overlap with more common conditions. It can also be difficult to distinguish between different types of CIDP.

Delays in diagnosis or a misdiagnosis are understandably frustrating. If you have experienced something like this, the following is a basic guide to strategies that may help.

Continue with treatment

Know that there is no wrong way to feel. If it's taken multiple years and multiple healthcare providers to receive an accurate diagnosis, it's normal to feel some amount of distrust. It's normal to have days where you feel like medical professionals cannot help you or question whether another appointment is worth your time and money.

But while these thoughts and feelings are normal, it is important that they do not guide your decisions about treatment. CIDP is a progressive disease that can get worse over time, leading to more severe symptoms and a greater chance of disability. CIDP can also lead to complications including problems with bladder control, blood pressure, heart problems, and complications that interfere with a person’s ability to breathe.

CIDP is treatable. Therapies like immunoglobulin infusions, plasma exchange, and corticosteroids can keep the disease under control and in many cases put the disease into remission. Physical therapy and rehabilitation can improve muscle strength, coordination, and function.

One of the most important steps in treatment is finding a healthcare provider who understands the condition. Treatment for CIDP is typically overseen by a neurologist who specializes in neuromuscular disorders. Conversations with a healthcare team should discuss potential treatment side effects and how you will be monitored for side effects.

Keep learning about CIDP

This is an important aspect of managing any health condition—learn as much as you can. This is especially important when you are diagnosed with a rare condition. The more knowledge you have, the better you will be able to communicate with your healthcare providers, understand your treatment options, and advocate for yourself.

Strategies for learning about CIDP:

• Dedicate a small amount of time each week to reading about CIDP.
• Keep a list of articles or other materials that you've read and that you want to read.
• Write down anything you do not fully understand or any questions you have for your healthcare providers. You can bring these up at your next appointment.
• Try to stay up to date on research about CIDP. Studies about CIDP, its causes, and how it can be treated are ongoing.
• Ask your healthcare providers for resources about CIDP.

Prioritize your mental health

Treatment for CIDP has specific goals like controlling disease activity and maintaining physical function. It can also help to think about treatment goals in a much broader term, with the overall goal being a better quality of life.

This includes mental health. Living with CIDP often means living with uncertainty, stress, financial concerns related to medical bills, concerns about treatment side effects, and the mental burden that often accompanies symptoms like weakness and fatigue. It's important to acknowledge the impact that CIDP can have on mental health and take steps to take care of your mental health.

Strategies for taking care of mental health:

• Keep a journal. Record notes on how you feel each day, including your moods, stress levels, and anything you find difficult. Also, keep notes on things that are going well and things that make you happy.
• Consider working with a mental health professional, such as a therapist or counselor. Aside from coping with things like negative thoughts, uncertainty, and stress, therapy can have other potential benefits—better confidence, better communication, better problem solving.
• Try to connect with other people who have CIDP through a support group that meets in person or online. You can also look for support groups for people who are living with other conditions that present some of the same challenges faced by people with CIDP.
• Take care of your physical health, focusing on nutrition and staying active.
• Try activities that have been shown to reduce stress and improve mental well-being, such as mindfulness meditation and breathing exercises.
• Prioritize sleep, and talk to your healthcare providers if you are having difficulty getting enough sleep or do not feel rested after sleep.
• Talk to your healthcare providers about your moods and mental health. Ask if they have recommendations.

Another important aspect of mental health is making time for yourself and the things you want to do, whether it's a hobby, a favorite TV show, or time spent with friends and loved ones.