06 | The Neurology Appointment and the First Clear Clue
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By October 2025 we had been waiting for the outpatient neurology appointment for several months. It felt like a long-awaited opportunity to finally get some answers. When the neurologist saw me arrive in a wheelchair she looked visibly shocked. We were surprised by this reaction, as we had assumed the GP had been keeping the neurology team updated on how much I had deteriorated since the July discharge.
Early in the consultation it became clear that none of the GP notes or records had been reviewed, even though they were all available to us on the NHS app. The letter from the Bupa FND specialist (who knew the neurologist) had also not been seen. The anti-GAD blood test had returned negative, and the EMG was clear. The neurologist therefore decided to request an anti-glycine receptor antibody blood test, to be sent to a specialist laboratory, specifically to investigate the possibility of PERM.
The neurologist examined the lump on my back and agreed with the GP that it was likely postural, which felt reassuring at the time. We left the appointment with no immediate plan for imaging of the lump or spine, and with the new blood test requested. My wife was in tears as we made our way home. The consultation had left us feeling that, despite months of rapid decline, very little of our day-to-day reality had been taken into account.
We felt particularly let down that no action had been taken on the Bupa specialist’s letter, which had been addressed and sent directly to the medical team in early September. It felt as though five to six weeks had been lost during which the specialist blood test could have been requested earlier. At that point we felt no closer to moving forwards. The specialist blood test was expected to take at least a month, so we were returning home to face the same daily challenges as before. We had had virtually no respite or proper sleep since July.
After the disappointment we quickly got back to our positive approach and focused on the things we could control — continuing with all the supplementary treatments we were already pursuing. We knew this was not a moment to allow depression to take hold and add to an already challenging situation.
We didn’t really think about what it would mean if the glycine receptor antibody test came back negative. We had looked into SPS and it didn’t make for comforting reading — a rare, incurable autoimmune disease affecting only 1–2 people in a million. SPS plus PERM sounded even worse and was incredibly rare (around 1 in 10–20 million). At times we even wondered whether FND could actually be the correct diagnosis after all, even though none of the symptoms or behaviours we saw in other sufferers seemed to align with what I was experiencing.
What I Would Say to Someone Now
If you have been waiting months for a specialist appointment and arrive in a much worse state than when you were last seen, pay attention if the team seems unaware of how you have deteriorated. When important letters from other doctors appear not to have been reviewed, it can be worth gently pointing this out before the consultation ends. Realising that weeks have passed without action on a recommendation that could have sped up testing can feel like valuable time has been lost. A single new test being sent off can feel like progress, but if the broader picture of your symptoms and injuries is not fully acknowledged, it is reasonable to feel discouraged. After the appointment it is easy to swing between hope and doubt — researching rare conditions can be frightening, and wondering whether a more common label like FND might still fit is a natural part of the uncertainty. Looking back, staying focused on what we could control while quietly questioning everything helped us keep going through those difficult weeks.
