Father-of-two Luke Pickering thought little of it when he woke up with pins and needles in his hands one morning. Yet within 24 hours, the sensation had spread to his toes - and there was far worse to come.
Within days Luke, 31, a mechanic from Nottingham, would find himself almost fully paralysed, unable even to move his eyes enough to close them for sleep.
The fact that he is now - 18 months on - able to tell his story, is in part thanks to the actions of his partner Alix.
The 31-year-old teaching assistant insisted he go to hospital when, within hours, not only did the pins and needles in his feet make him feel ‘like I was walking on a bed of nails’, but he started to feel so unsteady that he feared he might collapse while carrying his son Lucas, three, down the stairs.
By the time he arrived at A&E at King’s Mill Hospital in Nottingham, Luke was already losing sensation elsewhere around his body.
Within days he was unable to walk and even lost the ability to swallow.
‘I was completely paralysed,’ he says – ‘it happened too fast for me to process’.
Unable to move from his intensive care bed, Luke ‘was ready to say my goodbyes - it was a tough time’.
While he felt no pain, ‘the psychological trauma was the most difficult part to deal with,’ he says. ‘The hardest bit was worrying about my family and not being able to provide for them.’
Within days Luke, 31, a mechanic from Nottingham, would find himself almost fully paralysed, unable even to move his eyes enough to close them for sleep
He was ‘lucky’ in that doctors swiftly recognised the problem - Guillain-Barré syndrome (GBS), a condition where the immune system turns on the body and attacks the nerves, in particular the peripheral nerves that control the extremities such as the fingers and toes (which is why pins and needles in the feet and hands are typically the first symptoms).
This immune system attack can block the signals travelling down the nerves, leading to tingling, muscular weakness and co-ordination problems, which can then progress.
‘GBS can result in paralysis of the arms, legs and up to the face,’ explains Dr Javvad Haider, rehabilitation medicine lead at the National Rehabilitation Centre near Loughborough, part of Nottingham University Hospitals NHS Trust.
In some cases, the symptoms worsen over the first two to four weeks - to include numbness that affects other parts of the body.
‘In time, it can also affect the bowels and bladder, by impacting the nervous system which serves these organs,’ adds Dr Haider.
GBS is usually triggered by a viral infection, such as Campylobacter (a stomach bug), Covid-19 and flu. The symptoms of GBS start within a few weeks of the infection. In some people it can occur following surgery.
‘It’s an immune reaction,’ explains Dr Haider, adding however that in some cases GBS develops out of the blue and ‘we still don’t understand why’.
The condition is rare, affecting around 1,500 patients each year in the UK, according to the charity GAIN, a GBS support group.
This means diagnosis can be complicated as ‘there are some doctors who might go their whole career without seeing a case of GBS’, says Dr Haider.
Yet spotting it early is vital to ensure the correct treatment, which usually starts with intravenous immunoglobulin (IVIG), a dose of donated antibodies that counter the misfiring antibody cells released by the immune system.
If given early enough - i.e. within days of symptoms first appearing - IVIG treatment can slow the progression of the condition and prevent some of the more unpleasant symptoms, such as breathing problems or muscle damage. Some patients may need multiple rounds of IVIG.
If IVIG isn’t effective, then plasma exchange may be considered - this is where donated plasma (the liquid part of the blood that’s had the blood cells removed) is given to a patient via a machine, similar to kidney dialysis.
‘Plasma exchange washes the antibodies [that cause GBS] out; it washes the blood,’ explains Dr Haider.
Most patients who experience paralysis with GBS will be able to walk within six months - and will recover within a year, he adds.
Some, however, continue to have longer-term problems such as tingling in the hands and feet, nerve pain, exhaustion, muscle pain and weakness, and being unable to walk without help. Anxiety and depression are also common.
Luke’s GBS was a severe case, as he was paralysed ‘all the way to his face’, says Dr Haider. ‘Usually in this scenario we are expecting a recovery time of up to a year.’
Luke was given two rounds of IVIG, but these didn’t work - and within days his tingling and numbness worsened to paralysis. He was transferred to intensive care, where he remained almost completely paralysed for three weeks.
Fortunately, Luke responded to a third round of IVIG and plasma exchange - ‘I slowly started to get the feeling back in my body’, he recalls.
By the end of 2023, five weeks after being admitted to hospital, Luke was transferred to Linden Lodge, a specialist neurological rehabilitation unit and part of the National Rehabilitation Centre.
He was in a wheelchair as he was unable to walk - and his face was paralysed, which was also affecting his speech.
Staff initially kept their cards close to their chests, ‘because they didn’t want to give me false hope’, says Luke.
Luke with his partner Alix and children Lucas and Ivy. Fifteen months on, he says he is back at work fixing cars and tractors
Dr Haider stresses that the after-effects of GBS are extremely unpredictable.
‘With other neurological conditions, such as stroke and spinal cord injury, we quite often know very early on what level of disability a patient will be facing,’ he says.
But with GBS, people go on such long journeys to recovery that ‘we can be three months from the onset of GBS and still not know the final prognosis’.
Luke spent eight weeks in the neurological rehabilitation unit, working with physiotherapists, speech therapists, occupational therapists and psychologists – among others.
GBS can result in paralysis of the arms, legs and up to the face, says Dr Javvad Haider of the National Rehabilitation Centre
‘I went from a wheelchair to crutches, and then to one crutch and then none,’ he recalls.
‘We said it was going to be a race between me and my baby daughter [Ivy, now almost two] as to who would walk first.’
He was discharged in February last year and is back at work and feeling almost normal.
‘It’s a very difficult thing to go through – losing your independence,’ says Dr Haider.
‘Your life isn’t going to be the same any more and it’s easy to let everything overwhelm you. But Luke was one of the most determined individuals I have met.’
Fifteen months on, Luke says he is back at work fixing cars and tractors and ‘trying to live life to the full’.
He is aware of the impact that his illness, subsequent paralysis and long stay in hospital had on partner Alix, who ‘went into autopilot while I was in the hospital’.
‘She stayed strong because we’ve got two children - but when I got home from hospital, it took its toll on her emotionally,’ says Luke.
Luke has now become a spokesman for the National Rehabilitation Centre. His role includes talking to people ‘who’ve been through what I’ve been through to let them know there is light at the end of the tunnel’, he explains.
GBS has left him with some lingering health problems.
‘My feet aren’t fully there yet in that I still get tingling sensations, but it’s nothing I can’t deal with,’ he says.
‘It doesn’t stop me from doing anything. Whatever I could do before, I can do now - I just appreciate it more.’
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