Hi all,
My name is Liam Jay Squires. I’m 30 and have had several health conditions from birth. These include spina bifida and neuropathic bladder, and, since 2022, FND.
Towards the end of 2022, I was having a normal day at work. I had just been handed my transport documents and the keys for my wagon. I am fortunate to say I did not take that wagon out that day, as I had my first seizure completely out of the blue. I then spent the best part of a year at The Walton Centre in Liverpool, where I was having 10–15 seizures a day. For the first six months or so, I also had terrible dystonia episodes where I was not aware of where I was or why I was there.
I had multiple EEGs, which came back clear – this is typical for FND. I was then seen as an inpatient by an epilepsy specialist and their clinic, who confirmed my symptoms were not caused by epilepsy. After that, I saw my regular neurologist, Paul May, who has cared for me since birth because of my spina bifida. I underwent many tests to rule out any link between my symptoms and my existing conditions: these included a full-body MRI and EMG nerve conduction tests. Once these possibilities were ruled out, my neurologist explained that I had responded well to Keppra (levetiracetam), which had stopped my tonic-clonic seizures, and that no other tests had found a definite alternative cause. It was then that I was diagnosed with FND. I remain on Keppra, and it has kept my seizures under control.
However, I still struggle with severe brain fog and fatigue, and there are days when I can barely do anything. At first, the diagnosis turned my life upside down – I am no longer able to drive until I have been free of seizures and dystonia episodes for two years. It can feel very daunting at first. I was told there was little more the doctors could do, and I completed a neuroeducation programme, though it provided me with very little useful information (it may help others, but it was not right for me). I started doing my own research and have met some truly amazing people along the way. I am now a proud member of the FND Connect community.
If anyone would like me to clarify anything, or simply wants someone to talk to, I am always around in the support Discord group.
My name is Liam Jay Squires. I’m 30 and have had several health conditions from birth. These include spina bifida and neuropathic bladder, and, since 2022, FND.
Towards the end of 2022, I was having a normal day at work. I had just been handed my transport documents and the keys for my wagon. I am fortunate to say I did not take that wagon out that day, as I had my first seizure completely out of the blue. I then spent the best part of a year at The Walton Centre in Liverpool, where I was having 10–15 seizures a day. For the first six months or so, I also had terrible dystonia episodes where I was not aware of where I was or why I was there.
I had multiple EEGs, which came back clear – this is typical for FND. I was then seen as an inpatient by an epilepsy specialist and their clinic, who confirmed my symptoms were not caused by epilepsy. After that, I saw my regular neurologist, Paul May, who has cared for me since birth because of my spina bifida. I underwent many tests to rule out any link between my symptoms and my existing conditions: these included a full-body MRI and EMG nerve conduction tests. Once these possibilities were ruled out, my neurologist explained that I had responded well to Keppra (levetiracetam), which had stopped my tonic-clonic seizures, and that no other tests had found a definite alternative cause. It was then that I was diagnosed with FND. I remain on Keppra, and it has kept my seizures under control.
However, I still struggle with severe brain fog and fatigue, and there are days when I can barely do anything. At first, the diagnosis turned my life upside down – I am no longer able to drive until I have been free of seizures and dystonia episodes for two years. It can feel very daunting at first. I was told there was little more the doctors could do, and I completed a neuroeducation programme, though it provided me with very little useful information (it may help others, but it was not right for me). I started doing my own research and have met some truly amazing people along the way. I am now a proud member of the FND Connect community.
If anyone would like me to clarify anything, or simply wants someone to talk to, I am always around in the support Discord group.
Thank you for reading
Liam Jay Squires
