When I Got My FND Diagnosis After Years of Seeking Answers

One day I was an active, confident, outgoing person and then everything changed overnight… literally. I was woken, in the early hours of the morning, by pain in my lower back. Thinking I had been sleeping awkwardly, I decided to get out of bed to try to “walk off” the pain but as I went to stand up, I fell crashing to the floor. Before I could process what was happening, the pain in my lower back became searing muscle spasms and I began screaming in agony. Then I realized that as well as causing excruciating pain, the muscle spasms felt like they were holding my entire body hostage and clouding my ability to think.

I tried to move and that’s when I realized my left leg felt numb and I couldn’t move it — for some unknown reason, the messages my brain was sending to my leg just weren’t getting through. I was able to walk by stepping forward with one leg and dragging the other. In addition, I started to develop other symptoms including falling on a regular basis and without warning, as well as sudden jerks and tremors in my leg. I also noticed other symptoms such as difficulty remembering things, forgetting words or saying the wrong word mid-sentence, and overwhelming exhaustion.

Initially, I thought that after a few days of rest, everything would return to how it was before. Then, as the days grew into weeks, and the weeks into months, and the months into years, I began to realize things might not change back. I felt like I was being passed from one doctor to another, having test after test, but not getting any answers. I couldn’t understand why nothing was showing up on the tests when I had so many physical, and obvious, symptoms. I felt lost and confused. My self-confidence and self-worth plummeted. I was worried that people didn’t believe me, especially as I was still waiting for a diagnosis and had no answers to their understandable curiosity about the sudden and drastic changes to my health. This led to me struggling with severe depression and anxiety.

A year after my symptoms first began, I attended an appointment that would become the one to solve the mystery – the one to provide the answers I had been so desperately seeking! After describing all my symptoms and explaining that none of my test results had provided any answers, I don’t expect the response the doctor gave – “This sounds a lot like functional neurological disorder.” I sat in stunned silence in my wheelchair as the Consultant turned to his desk and began jotting something on a torn-off corner of paper. He turned back to me, handing me the scrap of paper that he had just written on – it read “www.neurosymptoms.org” – and he explained that this website was “written by a neurologist with a special interest in these problems” and advised me to have a read through the website and to discuss it with my neurologist.

When I arrived home, I was keen to see the website that might provide the answers to the mysteries my health had created. As I began reading about functional neurological disorder (FND) and the symptoms it caused, I was stunned – this was me! The more I read, the more everything started making sense. When my neurologist later diagnosed me with FND, I couldn’t believe it – I had answers, admittedly not all of them were what I wanted to hear, but at least they were answers.

Finally having a diagnosis made such a difference and answered so many questions. Even the feeling that my leg wasn’t “listening” to my brain now made sense because FND is “a problem with the functioning of the nervous system and how the brain and body send and receive signals.” For such a long time I felt lost, confused, misunderstood, alone and scared. But all that changed when I was diagnosed with FND – I went from feeling isolated to realizing that FND is “surprisingly common” and I wasn’t as alone as I had previously felt.

Receiving a diagnosis was like finally finding the missing piece of a puzzle – at last, there was a full picture instead of a jumble of mixed-up pieces. My symptoms weren’t as random as they seemed, they all stemmed from one condition, and knowing this small detail is helping reduce the anxiety I have about my health. Having a diagnosis has helped in a lot of ways, but I still feel there is still so much more to learn. Since my diagnosis, I have been trying to learn one important thing – I have FND, but that doesn’t mean FND is all that I am.