01 | How It All Started
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 my lower back, followed by tingling and burning sensations around the groin area and difficulty fully opening my mouth when yawning. Within days I experienced several sudden involuntary backward falls without 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 been unwell. I was asked to arrange a blood test and monitor my blood pressure, which was elevated. The earliest appointment was a week later.
While waiting, 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 and could not get my heels flat on the floor. On the day of the blood test the nurse looked concerned as I shuffled out unsteadily, but I said I would be okay.
When I returned home my blood pressure was rising rapidly. When the lower reading went above 100 we called 111. They advised us to go to A&E urgently. By the time my wife had parked the car I could no longer walk and needed a wheelchair. I was admitted for several days. Investigations included blood tests, a CT scan of the head, and an MRI of the spine. 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.
TECHNICAL NOTE
The early symptoms described — restricted jaw opening (trismus), burning sensations (paraesthesia), and sudden backward falls without loss of consciousness — are classic early signs of stiff-person spectrum disorders. These can be triggered by issues with inhibitory neurotransmitters such as glycine and GABA in the central nervous system. At this stage they are often mistaken for musculoskeletal or post-viral problems.
