CIDP Diagnosis: When Nobody Knows What Is Wrong

When Nobody Knows What Is Wrong: The Long Road to a CIDP Diagnosis

By Ayoposi Ojelabi · Published: 30 March 2026

5 min read

The hardest part of developing chronic inflammatory demyelinating polyradiculoneuropathy (CIDP), which is also written as chronic inflammatory demyelinating polyneuropathy, is not always the symptoms themselves. It is the long period before anyone can tell you why your body is changing, when every consultation either offers no answer or the wrong one while your body keeps changing in ways that make less sense each day.

CIDP is a rare autoimmune neurological condition in which the immune system attacks the protective covering of the peripheral nerves, gradually affecting strength, balance and sensation. Delays in diagnosis are common, especially in the early stages, because the symptoms can resemble many more familiar conditions. That does not make the uncertainty easier to live through, but it helps to know that this stage is part of the experience for many people before the illness is finally identified.

The First Signs in Lagos

Before any of this became a medical story, it was a story about daily life. I was working as a network engineer in Lagos, my wife worked in Ibadan, and I travelled between the two cities at weekends. We had a daughter who was not yet a year old, and life was busy, structured and physically normal.

The first signs came so quietly that I dismissed them for months. I could no longer play football for more than five minutes without unusual fatigue, and climbing the stairs at work, which had once taken under a minute, now took five with short rests in between. I told myself it was stress, or Lagos traffic, or long hours, because anyone would be tired. Then my little finger stopped going into my pocket easily, my hands and legs began to feel numb, and I started losing my balance more often. Some mornings I woke up unable to feel my hands at all.

I went to my family doctor in Ibadan, and he told me to go home and rest.

Four Visits, One X-ray, No Answers

Between September 2021 and January 2022 I went back to that doctor four times. On the fourth visit, perhaps because I had returned often enough that something finally needed investigating, he asked me to have an X-ray. It came back normal, and that was the end of the investigation.

I tried vitamin supplements, hoping something would make a difference, but my condition kept worsening slowly and steadily, each day taking something small away. My wife and I were already planning to move to the United Kingdom, and I told myself that once we arrived I would get better assessment, better tests and better answers. We arrived in March 2022, full of hope, and the symptoms continued to worsen.

Searching Online and Finding the Wrong Answer

I began searching my symptoms online. Because I had previously been drinking quite heavily, the combination of weakness, numbness and fatigue led me towards liver cirrhosis, and for several weeks I was frightened in a very specific and completely wrong direction, before I had seen anyone with neurological expertise. Searching neurological symptoms online without medical guidance rarely helps and can easily mislead, because the body does not present symptoms in neat categories and a search engine cannot weigh complexity or context.

In April 2022 I saw my GP, who ordered blood tests. When they came back normal I was referred to a neurologist, but the earliest NHS appointment available was in February 2023, nearly a year away. By June 2022 the weakness had spread significantly, and waiting that long was not realistic.

A&E and the Answer That Answered Nothing

Before I saw a private neurologist I had already spent time in A&E at a hospital in East London. After a long wait and several tests, the doctor told me I had “neuropathy of unknown origin”. That phrase was deeply frustrating, because it confirmed that something was wrong with my nerves and that my body was not working normally, and then it stopped there, with no cause, no direction and no treatment pathway. It was a label that acknowledged the problem without explaining it, and I left with nothing I could act on.

The Private Neurologist and the Name

In June 2022 I paid to see a private neurologist. After a nerve conduction study, a test that measures how quickly electrical signals travel through the nerves, I finally had a name for what was happening: CIDP.

The diagnosis brought two things at once. One was relief, because after months of dismissed symptoms and unclear answers I knew what I was dealing with. The other was fear, because I had never heard of CIDP and did not yet understand what it meant for my future. Unlike some nerve conditions, CIDP does not simply resolve, and it can persist, relapse and worsen, but it is treatable and many people stabilise once treatment begins.

In July 2022 I was referred to the National Hospital for Neurology and Neurosurgery. More tests followed, including nerve conduction studies and EMGs, a lumbar puncture, MRI scans of my spine and brain, a PET scan, nerve and muscle biopsies and countless blood tests, and the diagnosis was confirmed.

What the Waiting Gap Actually Costs

The gap between the first symptoms and an accurate diagnosis costs more than time. It costs function, because an untreated progressive neurological condition keeps causing damage week after week. Earlier diagnosis and treatment cannot reverse damage already done, but it can help limit further harm.

It also costs certainty. Living for months with a body that is clearly changing while medicine keeps returning inconclusive results is psychologically exhausting in a way that is hard to describe. You stop trusting your own perception of what is happening, and you begin to wonder whether you are making something out of nothing. And it costs money for those who can afford to pay privately to speed things up, while for those who cannot it costs even more time.

If you are in that gap now, being told your tests are normal and offered a referral that does not match the pace of your decline, keep a record of your symptoms:

date each change as you notice it
note what you can no longer do, such as climbing stairs, gripping, buttoning clothes or walking a set distance
bring the record to every appointment, because it helps specialists see the pattern

Do not stop advocating for yourself. The waiting gap is real and painful, but there are people on the other side of it who understand what you are going through.

What the Diagnosis Journey Taught Me

The period between the first symptoms and an accurate diagnosis is one of the most disorienting parts of any serious neurological illness. Your body is clearly changing and your life is clearly being disrupted, and yet medicine keeps returning normal results or vague labels that offer no way forward.

If you are in that period now, dismissed by one doctor, told your tests are normal, or searching online and finding only fear, I want to say this clearly: normal test results do not mean nothing is wrong. Early CIDP can be hard to detect, and many people see more than one doctor before the pattern becomes clear.

A nerve conduction study was the test that finally revealed what was happening in my nervous system. A diagnosis is made by specialists from your symptoms, an examination and several tests, but if you have progressive weakness or numbness in your limbs it is worth asking your neurologist whether a nerve conduction study is appropriate for you.

The path to diagnosis was long, frustrating and expensive. But once I had a name for what was happening, I could begin fighting the illness instead of the uncertainty, and that changed everything.

When to Seek Urgent Help

If you develop rapid weakness, difficulty swallowing or trouble breathing, seek urgent medical care. This essay is a personal account, not medical advice, so please speak to your own medical team about your symptoms and treatment.

For support, Inflammatory Neuropathies UK and the GBS|CIDP Foundation International both have information for people living with CIDP. You can read the longer story of what came next in “Living With CIDP: My Story of Illness, Intensive Care, and Recovery”.

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