01 | How It All Began
SUDDEN ONSET OF symptoms
My symptoms started quite suddenly in early July 2025. I had been completely fit and well — in fact, the best health of my entire life in terms of diet and exercise. I had regular Bupa health checks, and the most recent one had confirmed a very healthy picture. I was a self-employed architect with a young family and no significant medical history.
After a long car journey I noticed an uncomfortable feeling in the lower back, followed by tingling and burning sensations around the groin area and difficulty fully opening my mouth when yawning. Within days, and over the course of the next week, I experienced a handful of sudden involuntary backward falls without any warning, loss of consciousness or dizziness. This prompted a visit to my GP. The GP suggested these could be symptoms from a post-viral infection, although I explained I had not experienced any recent illness. I was asked to arrange a blood test and to monitor my blood pressure, which was elevated. The earliest blood test appointment available was a week later.
While waiting for the blood test, I started experiencing involuntary jaw clamping where my top teeth would penetrate my bottom teeth, causing significant pain. These spasms were strong enough to damage my lower teeth. As the blood test appointment drew closer I began to struggle when rising from sitting to standing — I would be forced onto my tiptoes initially and could not get my heels flat onto the floor for the first few steps.
On the day of the blood test I recall getting up from the chair to leave and being very unsteady, forced onto my tiptoes. The nurse looked concerned, but I said I would be okay. When I returned home I started to feel unwell and monitored my blood pressure every 20 minutes. It was rising rapidly and consistently. When the lower reading went above 100 we called 111 and described all the symptoms. They advised us to get to A&E urgently.
My wife dropped me in the waiting room and went to park the car. By the time she returned I could no longer walk, was very unsteady and shuffling my feet. I had to get into a wheelchair to see the triage nurse. The nurse was very concerned about the number of symptoms I was experiencing and I was admitted to hospital for several days. Investigations included blood tests, a CT scan of the head, and an MRI of the spine. I was examined by neurology. During the stay I failed a zimmer frame test on the ward, falling backwards, and there was a clear difference of opinion between the physiotherapists about whether the presentation was simply sciatica. Ultimately I was discharged with a diagnosis that did not seem to account for the full picture of what was happening to my body.
What I Would Say to Someone Now
If your symptoms appear suddenly and involve multiple areas — jaw, balance, gait, sensation — and they do not improve with simple explanations, do not assume it is something common or minor. Write down exactly what you are experiencing, when it happens, and how it affects daily function. Push gently but firmly for the clinical team to explain how all your symptoms fit together. Early detailed documentation can make a real difference later.
