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. It seemed they were relying more on the test results than on what I was describing. 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 steadied myself on hospital equipment just outside my cubicle and built up the courage to try to reach the toilet about 50 yards away at the end of the ward. 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’. The discharge summary itself noted on the front page that the diagnosis was possible FND, yet elsewhere in the document it stated that SPS could be a consideration and that further tests would be undertaken. I was advised to continue with outpatient physiotherapy and pain management, although in practice only community occupational therapy visits were arranged.
As I waited in the transport lounge in a wheelchair, I tried to stay positive and chatted with other patients. Without warning I suffered a powerful and painful jaw clamp — my upper teeth fully penetrating my lower ones (I had already lost three). It was a frightening reminder that, despite now being on paracetamol, codeine, gabapentin and diazepam, my symptoms were no better at all. In the pain and distress of the moment I did not read the discharge summary thoroughly and overlooked the mention of SPS, focusing instead on the possible FND label. Looking back, leaving hospital again while still unable to walk or control my body felt deeply wrong. The gap between what the clinical team seemed to see and the daily reality of my symptoms was continuing to widen.
What I Would Say to Someone Now
If your symptoms are getting markedly worse day by day despite being in hospital, and simple actions like standing, walking or even having a scan trigger intense spasms, pay close attention to that mismatch. Note exactly what helps or worsens your symptoms — even small details such as the effect of medication, noise or position. It can feel overwhelming to speak up when you are frightened and in pain, but describing your experience as clearly as possible, including what the tests show versus what you are actually living with, can help the team see the full picture. Sometimes a label is applied quickly with little discussion, and being referred only to a website can leave you feeling unheard. Even when a document contains mixed messages — such as one diagnosis on the front page and a different possibility noted elsewhere — it can be helpful to gently highlight the inconsistency before you leave hospital. In the distress of discharge it is easy to miss important details in the paperwork; looking back, paying closer attention to every part of the summary might have prompted earlier questions about rarer conditions like SPS.
