Neil's Story | GBS

My Guillain Barré Syndrome story started with prostate cancer. In December 2011 I was diagnosed with prostate cancer, unfortunately it had not been caught early and was advanced, and as a result I underwent brachytherapy and radiotherapy alongside ongoing hormone therapy. It remained stable until December of 2023 when I was advised by my oncologist that my PSA was rising which indicated my prostate cancer was becoming hormone resistant. She advised a course of chemotherapy consisting of 10 rounds of dosetaxel on a 3 weekly cycle which commenced in January 2024. To begin with, the chemotherapy sessions were tolerated reasonably well, however as the course progressed I began to notice increased side effects. In May I noticed tingling in my feet and hands, and I was advised this was peripheral neuropathy, a side effect of the treatment which was usually mild and went away after finishing the treatment cycle. Following my final chemotherapy session in June, I expected to start feeling better as dosetaxel is not long lasting in the body, and three days following treatment side effects should start to improve. Unfortunately the neuropathy I was experiencing showed no signs of improving and in fact started to get worse especially in my feet where the tingling and numbness was growing in intensity. At this time I also began to suffer from muscle weakness in my left hip which was thought to be due in part to the chemotherapy, and in part due to my relative inactivity causing muscle wastage. During August I contracted COVID-19 and tested positive after being informed by a friend that he was positive, it was symptomless at the time, and I tested clear 8 days later. Though I did have some fatigue and I physically still had a problem with my left hip I was able to play table tennis and play guitar standing up with my band at a party. I began to find it difficult to carry out some day to day activities such as riding a bike, and bought an electric bike which helped me get around. Things continued like this through September and October and I was able to continue most daily activities. During October I was invited to have the Shingles, flu and Covid vaccines. I rang my GP prior to booking to be sure I could have the Covid jab not long after having Covid and was assured that it would not pose any problems. Throughout October my mobility was relatively stable, and on 25th October I was able to drive myself to a cardiology appointment at the hospital and walk around unaided. However, shortly after this date my health and mobility started to deteriorate at an alarming rate. I had to buy a walking stick as my left hip was now showing signs of increased weakness. A friend of mine then offered me a Rolleron walking aid which I acquired in early November and used it to play table tennis, but it was becoming a struggle. By mid-November I could no longer climb the stairs, having to use a stick and lifts to access an MRI scan appointment. I spoke to my oncology nurse on 15th November and was asked to attend the oncology assessment unit. By the time I attended my legs were not working well at all, my left leg was not functioning at all and I had limited movement in my right leg. I was sent home with a review of my pain medication and in late November started a new drug regime of Morphine twice a day 5mg and paracetamol every 4 hrs and Oramorph when needed, all prescribed by the oncology unit. Following the commencement of my new drug regime I developed a chest rash which wrapped around to my back, this was diagnosed as shingles at the assessment centre. Meanwhile my mobility was worsening and I was struggling to pass water and began to have falls. In a attempt to regain some mobility and independence I tested out a mobility scooter, however I no longer felt confident to drive a car and could not use my left leg and move it without using my hands to lift it on and off the scooter or in and out of a car. By late November I couldn’t get out of bed, and my developing back pain made it difficult to sit up in bed. I could no longer get dressed or put shoes on by myself. Finally by the end of November my right leg also stopped working, at which point an ambulance was sent to transfer me to A&E for a neurological assessment and I was admitted to the medical emergency unit. In the course of a few days I went from being able to walk with mobility aids to being completely paralysed, which was an enormous emotional shock and completely unexpected. I was eventually transferred to a ward after 3 days on the medical emergency day care unit, and after much discussion with consultants I was diagnosed with Guillain Barrè Syndrome (GBS). A neurological consultant prescribed immunoglobulin infusion treatment, and this started in mid-December after various neurological tests. As I write this, in March 2025, I have been transferred to a neurological rehab unit where I have been since January 2025. There has unfortunately as yet been no improvement in my condition, and I am completely paralysed from the bottom of the rib cage down. I can also suffer severe upper back pain due to metastasis in my t3-5 vertebrae. My scans show stable but pathological spinal fractures, but no spinal compression and this has not worsened in the last 2/3 months. Currently my prognosis is as is ongoing, GBS is impossible to predict regarding outcome - so it is a case of wait and see if the treatment has any positive impact. This is my story which I would like to share with those undergoing chemotherapy. It is my belief that the combination of chemotherapy, added to by contracting Covid, then Covid, flu and shingles vaccinations tipped my auto-immune system over the edge and initiated the onset of GBS. I hope this story will provide people on chemotherapy with an awareness of the unexplained risks involved. Most peripheral neuropathy symptoms are treated as temporary, sadly mine are not. The GBS risk is 1 in 300,000 so maybe I was just unlucky, but the onset of my disability took just 3 days and has been an absolute shock to the system.