Kevin's Story | GBS Recurrence

I'm Kevin, from Kent, and I had Guillain-Barré in 2008. I was paralysed but avoided being put into an induced coma. My recovery was good, but still took a year to return to work full time.

At the start of February 2025 I contacted gastroenteritis and it wiped me out for the week. Thinking I was OK the following week I continued as normal. Then on the Wednesday evening I started losing movement in my feet and my legs and hands. I said to my wife I think I have GBS again. 

Having called 111 at midnight and with no response we called 999 at six in the morning, they arrived half an hour later. I was taken to Medway Maritime Hospital. On the second day I was diagnosed with GBS for the second time but did not receive any medication immediately as they were out of stock at the pharmacy. The condition rapidly took hold climbing my body and shutting me down. I had difficulty breathing and was told I needed to be placed in a induced coma as my heart would not take the stress. I left a message to my wife and family that I loved them, having had this previously I knew it was serious. 

At some point GBS affected my heart and AF kicked in, beating at almost 200bpm. I could hear the Doctor's preparing me for a cardioversion [a medical procedure used to restore a normal heart rhythm in individuals experiencing atrial fibrillation or other arrhythmias]. I was aware of the whole procedure.

I don't remember much apart from the nightmares being so vivid and real. 

I was put on Plasma exchange, litres of the stuff.

Visitor, Buddy the dog, living up to his name

Being paralysed again was dreadful. Not being able to move leaves you in an emotional vulnerable state. ICU and HDU were second to none in care.   

Eventually I improved enough and was transferred to a general ward, which was totally inappropriate for my condition where all nursing staff needed to be aware of my requirement. Sadly this is not always the case especially at night where staff were not able to turn me.

I was also put on an inflatable bed with no inflation machine. It was dreadfully painful. Every day I was promised a new mattress it never came. The experience put me into a state of panic not being able cope.

My condition worsened and was transferred back to ICU for further treatment.  Eventually I improved and with the help of a brilliant physiotherapist and a better general ward I improved, eventually being transferred to a rehab centre in Canterbury.

It's now been around four months and I'm now back home to continue my recovery. It's going to be a long haul back to fitness but having the determination to get better definitely helps.

I wish anyone with this condition all the best. Stay positive and work hard, light is at the end of the tunnel.

Inflammatory Neuropathies UK note: Kevin also kindly shared and important bit of advice for patients and family. Keep a record of events - don't rely on memory. Whether your notes are about the condition, progress, or care, it's important to have these to refer to as at a stressful time, it can be easy to forget a conversation.