I remember it like it was yesterday – the first signs of something not quite right with my body. Around the 5th grade, I began to notice that stretching was getting harder. My legs felt stiff, and I started tripping over nothing more often than I’d like to admit. The pain in my knees and legs became a constant companion, something I just assumed was normal growing pains. Little did I know, these were the early signs of Hereditary Spastic Paraplegia (HSP), a condition I wouldn’t fully understand for decades.

Middle school was when things started to escalate. I was always active, involved in sports, and pushing myself to the limit. But my body began to push back. My gait became awkward, the spasticity in my legs grew more noticeable, and the pain intensified. Despite this, I could still perform at a reasonably high level athletically, which was both a blessing and a curse. On the surface, I was a strong, capable athlete, but internally, my body was struggling, and I didn’t know why.

By the time I reached 9th grade, the issues with my legs could no longer be ignored. My parents and I started seeking medical advice specifically for the problems I was experiencing. My general practitioner ran countless tests – some of the most advanced for the time – but they were always focused on my legs, never considering the possibility that the root cause could be neurological. We were searching for answers, but we were looking in the wrong place.

Throughout high school, my injuries were chalked up to sports-related issues. The constant knee pain, the surgeries, and the physical therapy were all attributed to my athletic activities. Looking back, it’s likely that many of these injuries were actually related to HSP, but at the time, no one considered that possibility. I went through the motions, enduring treatments that never quite addressed the underlying issue.

Hereditary Spastic Paraplegia is often misdiagnosed or not diagnosed at all, especially in younger individuals. Common misdiagnoses include cerebral palsy, multiple sclerosis, and simple muscle strain. These misdiagnoses can lead to years of unnecessary treatments and interventions, as they did in my case. It wasn’t until much later that we started to piece together the real puzzle.

It took until I was in my 40s for a breakthrough to happen. An orthopedic specialist, after hearing my long history of leg issues, recommended that I see a neurologist. It was a simple suggestion, but it changed my life. The neurologist suspected a neurological disorder almost immediately, and after a battery of tests, I was finally diagnosed with Hereditary Spastic Paraplegia.

The testing for HSP typically starts with a physical examination and a thorough review of family history. Doctors may use genetic testing, MRIs, and nerve conduction studies to confirm the diagnosis. HSP is a complex disorder with many variations, each with differing symptoms and progression rates. For some, it might primarily affect the legs, while others might experience more widespread neurological symptoms. My diagnosis was a revelation – it explained so much about what I had been experiencing all my life.

When I finally received my diagnosis, I felt a wave of relief. I wasn’t just clumsy or prone to injuries; there was a reason why my body was the way it was. Understanding that I had HSP allowed me to focus on managing the condition rather than constantly questioning why these things were happening to me. It also gave me a path forward – a way to live my life with the best possible quality, supported by my family, friends, and medical team.

I know how frustrating it can be to live with unexplained symptoms. The journey to a diagnosis can be long and filled with dead ends, but I encourage you to persevere. Educate yourself about potential conditions like HSP, and seek out doctors who specialize in neurology when possible. If you’re struggling, know that you’re not alone, and there are people out there who understand what you’re going through.

If you ever want to talk, have questions, or just need someone to listen, feel free to reach out to me via email or on social media. We’re all in this together, and together, we can find the strength to keep moving forward.