When Nadia Mulliner, 64, first started to experience pins and needles in her feet, in May 2017, her GP reassured her this was nothing to worry about. At around the same time she also started falling down. “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 time she fell flat on her face when leaving a restaurant in Manchester. “People just thought I was drunk which was so embarrassing.”
Despite repeated visits to her doctor, Nadia’s symptoms were initially dismissed as ‘muscular’ or linked to her type 2 diabetes. “I was confused,” she says today. “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.”
But Nadia’s condition continued to get worse. The pins and needles in her feet 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, things were no better. “I had so little strength in my legs,” she says. “My husband, Richard, and brother, Peter, would have to physically haul me up the stairs – one pulling, one pushing from behind.
Nadia is now on a trial for a new drug (Image: Courtesy Nadia Mulliner)
“I was really struggling, so we decided to move to a house in Wetherby with a downstairs bedroom and bathroom. My family was really worried. My doctor thought it was odd, but didn’t know what it was. “When my hands began to shake she suggested I might have Parkinson’s disease. I was put on steroids and referred for physiotherapy. I’ve always been an upbeat, positive person. So, rather than feel sorry for myself, I thought – right, let’s blast this.”
Finally, it was the physiotherapist who spotted the red flags doctors had missed. She suggested the problem wasn’t muscular and advised Nadia to see a neurologist – urgently. In February 2018, Nadia was finally diagnosed with chronic inflammatory demyelinating polyneuropathy (CIDP), at the Sheffield Teaching Hospital. CIDP is a rare autoimmune disease that attacks the nerves.
A lumbar puncture and electrical tests corroborated the condition. “Consultant Neurologist, Dr Channa Hewamadduma, explained that damage to the myelin sheaf was stopping signals from my brain reaching my body.” Meanwhile, Nadia’s walking had deteriorated so much in the last few weeks, she was now using a wheelchair.
CIDP currently affects 4,000 people in the UK, with more than 600 new cases a year. “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.”
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 at some point been misdiagnosed.
The most common cases of misdiagnosis were Guillain-Barré syndrome (37%), fibromyalgia (13%), diabetic polyneuropathy (11%), multiple sclerosis (9%) and toxic neuropathy (7%).
Nadia put on weight after doctors put her on steroids (Image: Courtesy Nadia Mulliner)
“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 tend to 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. The standard treatment for GBS is a single course of IVIg (intravenous immunoglobin) treatment. IVIg is also commonly used to treat CIDP, but CIDP needs repeated courses, given long-term.”
Immunoglobin is derived from donated blood and contains ‘healthy’ antibodies that help prevent the immune system from damaging nerves. This helps to prevent further nerve damage. “Delays in diagnosis and treatment can lead to poorer outcomes.”
Nadia began 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 has also lost the 5 stone she put on when she was 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 intravenous immunoglobin treatment for a few years, Nadia is now part of a promising new clinical trial (for a new 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.”
