My sps Plus PERM JOURNEY

In July 2025, I began experiencing what seemed like minor neurological symptoms — jaw stiffness, unexplained backward falls, and difficulty standing from a seated position. This then quickly progressed to include, jaw clamping, and an inability to walk unaided.

Over 2 hospital admissions, tests were undertaken but did not show anything of significant concern. The explanations I was given reflected more common conditions, including sciatica and Functional Neurological Disorder (FND).

Over the following months, my condition continued to deteriorate. I suffered broken ribs, severe vertebral fractures, and developed kyphosis as a result of repeated spasms and muscle contractions. As Christmas approached, I experienced two cardiac arrests and was admitted to intensive care. An extremely rare autoimmune neurological condition (Progressive Encephalomyelitis with Rigidity and Myoclonus) was confirmed while I was in an induced coma.

This blog shares what happened and what I learned. It explains how symptoms that seem small at first can become serious, how diagnoses can change over time, and why it is important to speak up clearly if things are getting worse.

My aim is simple: to share my story in the hope that it helps others recognise red flags, communicate their symptoms confidently, and understand when it may be appropriate to ask questions or formally escalate concerns.

Start here to read my blog which I’ll be updating regularly