04 | the condition Worsens rapidly
RE-ADMITTED TO HOSPITAL
After the urgent readmission, my symptoms escalated sharply. I began experiencing electric shock-like waves travelling down both legs, while the jaw clamping became much worse. The spasms were now strong enough to damage my lower teeth further; one particularly distressing night I even pulled out two of them myself, following a strange intuition that my body was targeting teeth that had been damaged years earlier.
During the first night an Asian lady doctor spent time listening carefully to my concerns. My main worry was that I still could not flatten my heels when standing — my feet and toes felt like tensed-up claws. She prescribed diazepam, which brought immediate relief: my feet relaxed and I could finally place my heels flat on the floor. Yet I remained unable to walk unaided and continued to have numerous falls on the ward.
Urinary retention became a major problem. I could not urinate in a normal seated or standing position and eventually had to drag myself off the bed onto the floor to use a bottle on all fours. This was extremely painful and difficult, especially getting back up onto the bed afterwards. The wave-like spasms intensified and were easily triggered by touch, noise or emotion. When I went for an MRI of the brain, the noise of the machine set off almost continuous spasms, leaving me exhausted by the end of the scan.
Several neurologists visited my cubicle to test my reflexes and lower limb strength. Strangely, my legs still showed full strength even though I could not walk at all. Feedback from neurology remained limited. The day before discharge, a neurologist explained that they planned to send me home because the scans and tests had not shown anything unusual. I challenged this, saying I felt it was a mistake given the severity of the symptoms I was experiencing. The neurologist referred to his line manager and they agreed to keep me in for one more night.
After lights out, when the ward was quiet, I decided to test whether I could walk. I took one step and immediately swerved violently to the side, ripping down the curtains of another patient’s cubicle. It was frightening — my legs had full strength, yet they simply would not do what I wanted them to do.
On the morning of discharge, the doctor delivered the FND diagnosis without giving me any opportunity to discuss it and simply referred me to the NHS website for more information. While I waited for the formal discharge papers, another neurologist appeared and began testing my reflexes again. When I mentioned that I had been told I was being discharged with FND, she replied that it was too early to confirm this. The diagnosis was therefore downgraded to ‘possible FND’. I was advised to continue with outpatient physiotherapy and pain management, although in practice only community occupational therapy visits were arranged. In the pain and distress of the moment I did not read the discharge summary thoroughly and overlooked the mention of SPS. Looking back, leaving hospital again while still unable to walk or control my body felt deeply wrong.
What I Would Say to Someone Now
If your symptoms are getting markedly worse day by day despite being in hospital, trust the mismatch you feel. Note exactly what helps or worsens your symptoms. It can feel overwhelming to speak up when you are frightened and in pain, but describing your experience clearly can help the team see the full picture. Sometimes a label is applied quickly, but that does not mean it is the right one for the longer term.
Technical Note
Electric shock-like sensations (myoclonus), jaw clamping (trismus), urinary retention, and spasms triggered by sensory stimuli are common in stiff-person-plus syndromes. The preserved leg strength on reflex testing but inability to walk is a recognised “dissociation” that can lead to an initial functional neurological disorder (FND) label. The mixed messages in the discharge summary (possible FND on the front page but SPS noted elsewhere) are not uncommon when a rare condition is still being considered.
