Nadia Mulliner, 64, first experienced pins and needles in her feet in May 2017, which her GP dismissed as nothing to worry about. Around the same time, she began falling down unexpectedly. “The first time it happened, I was walking along the street in York, when I just fell to the ground. I thought I had slipped or tripped,” she recalls. “Soon, I was falling every couple of weeks. Sometimes, strangers had to help me up.” One incident occurred when she fell flat on her face leaving a restaurant in Manchester. “People just thought I was drunk which was so embarrassing.”
Misdiagnosis and Deterioration
Despite repeated visits to her doctor, Nadia’s symptoms were initially attributed to ‘muscular’ issues or her type 2 diabetes. “I was confused,” she says. “To begin with I thought I had a problem with my balance. I think there was this assumption that, because I’m diabetic, it was something to do with that.” Her condition worsened: the pins and needles felt “more like nails and screws.” She struggled to shower without a chair and could barely walk any distance. “I was working as a consultant and travelling a lot across the UK – but, eventually work became impossible.” At home in Doncaster, she had so little strength in her legs that her husband, Richard, and brother, Peter, had to physically haul her up the stairs. The family moved to a house in Wetherby with a downstairs bedroom and bathroom. When her hands began to shake, her doctor suggested Parkinson’s disease and prescribed steroids, referring her for physiotherapy.
Physiotherapist Spots Red Flags
It was the physiotherapist who identified that the problem was not muscular and advised Nadia to see a neurologist urgently. In February 2018, she was diagnosed with chronic inflammatory demyelinating polyneuropathy (CIDP) at Sheffield Teaching Hospital. CIDP is a rare autoimmune disease that attacks the nerves. A lumbar puncture and electrical tests confirmed the condition. Consultant Neurologist Dr Channa Hewamadduma explained that damage to the myelin sheath was stopping signals from her brain reaching her body. By then, Nadia was using a wheelchair.
CIDP: A Rare but Treatable Condition
CIDP currently affects 4,000 people in the UK, with more than 600 new cases annually. “CIDP is treatable, but timing is important,” says Professor Simon Rinaldi, an Academic Neurologist at the University of Oxford. “If diagnosis is delayed, nerve damage can potentially become permanent. CIDP occurs when the immune system damages the protective myelin sheath surrounding peripheral nerves. This can cause disability due to limb weakness, sensory disturbances, fatigue and pain, with some people needing a wheelchair when their disease is at its peak. Misdiagnosis and delayed diagnosis are unfortunately not unusual, with people often waiting months for a correct diagnosis. However, early symptoms such as pins and needles, fatigue and weakness, are much more common than CIDP itself, and often not a sign of a serious problem in themselves. What matters is how these symptoms evolve and the overall clinical picture, rather than any one symptom in isolation.”
Study Reveals Common Misdiagnoses
A recent study (Neuromuscular Disorders and Peripheral Neuropathies, 2026) involving 542 people from the UK, France, Germany, Italy and Spain found that the average time to diagnosis for CIDP patients was seven months, and more than a third had been misdiagnosed at some point. The most common misdiagnoses were Guillain-Barré syndrome (37%), fibromyalgia (13%), diabetic polyneuropathy (11%), multiple sclerosis (9%) and toxic neuropathy (7%). “CIDP and GBS are both autoimmune nerve disorders where the immune system attacks peripheral nerves,” says Professor Rinaldi. “In the early stages, symptoms such as tingling, pins and needles, numbness, pain and muscle weakness can be indistinguishable.” With GBS, symptoms develop rapidly, often after recent infection; in CIDP, symptoms develop more slowly. “The main distinction is that with GBS nerve damage happens over four weeks at most and then the immune system resets itself. With CIDP the progression in nerve damage goes on for eight weeks or longer. That’s why it’s often impossible to say whether someone has GBS or CIDP within the first few weeks. But, if someone has been treated for GBS and weeks later symptoms start getting worse again, CIDP should be considered. This is something medics need to be aware of.”
Treatment and Recovery
Nadia began intravenous immunoglobin (IVIg) treatment, and the effect was almost immediate. “After five days I was walking again. I was delighted! The whole family was thrilled.” Today she walks miles, goes to the gym, and enjoys socialising again. She also lost the 5 stone she put on while on steroids and inactive. “If anyone saw me walking, they would not know I had CIDP. But, if I’d left it any longer, the outcome might not have been quite so positive.” After being on IVIg for a few years, Nadia is now part of a promising new clinical trial for an MHRA-approved drug. “The distance between my treatments gradually grew – from four weeks, to eight, and then ten weeks – due to a shortage of available IVIg. But, I could feel myself going backwards. As a result, I was asked if I would be willing to trial a new drug, which I hope will eventually become available on the NHS.”
