03 | When THE SYPTOMS DIDN’T FIT WITH SCIATICA
RETURNING HOME RELEIVED BUT APPREHENSIVE
After the first hospital visit, I left with a diagnosis of sciatica and was told I would receive an outpatient appointment with a physiotherapist to receive treatment. I was prescribed pain relief medication. there was some relief that the physio appeared very confident in the diagnosis despite what felt like serious symptoms.
I’d never had sciatica before, and it sounded like a common condition that should be relatively straightforward to treat. However, looking back, leaving the hospital in a wheelchair probably should have been a bigger red flag. Deep down, something didn’t feel right. The symptoms I was experiencing went far beyond what I understood sciatica to be, but I felt I had to trust the medical professionals as they I assumed would have seen hundreds of cases and I had no relevant knowledge to suggest they would be wrong.
On the very first morning after leaving hospital, I had managed to get downstairs and used the zimmer frame to make my way into the living room. But as soon as I got there, I suffered another sudden backward fall. It was frightening — my body simply stiffened without warning and I went straight back.
A few days after discharge, the community occupational therapist and physiotherapist visited me at home. I was still unable to walk unaided. They asked to see me get up from sitting on the bed to standing using the zimmer frame. As I stood up I went onto tip toes and couldn’t et me heels flat on the floor. They immediately recognised that the hospital diagnosis of sciatica could not explain what they were seeing and arranged for my urgent readmission. The contrast with the hospital physiotherapist’s assessment — including the senior physiotherapist who had voiced doubts during the zimmer frame test — was stark. This rapid reversal of the discharge plan highlighted early inconsistencies in how my symptoms were being interpreted.
WHAT I WOULS SAY TO SOMEONE NOW
If you have just been sent home from hospital with a diagnosis that doesn’t feel right, and your body is still doing things that don’t match the explanation you’ve been given, trust that feeling.
In my case, the sudden backward falls, the way my feet locked onto tiptoes, the jaw spasms that were damaging my teeth, and the fact I couldn’t walk at all were not typical of simple sciatica. Yet I was discharged in a wheelchair with that label and told to wait for physiotherapy.
Looking back, the most important thing I wish I had done differently is to speak up more firmly at the time and ask for the diagnosis to be reconsidered while I was still in hospital. When the community team came to my house just days later and immediately saw the picture was wrong, it confirmed what my instincts had been telling me.
If you are in that situation now, document everything — times, symptoms, what you can and cannot do — and don’t be afraid to question the label if it doesn’t fit. A second pair of eyes from a different team can make all the difference. Early clarity matters, especially with a rare neurological condition where delays can allow symptoms to worsen rapidly.
