Nearly five years after a life-altering medical injury, I finally received a neurological diagnosis. Even then, it didn't fully explain everything I had experienced. Despite a long list of debilitating symptoms and a clear timeline showing when everything suddenly began, finding answers proved incredibly difficult.  I experienced severe electrolyte imbalances, dramatic weight loss, overwhelming weakness and fatigue, painfully rigid muscles, and a neck that had become fixed in a twisted position. Those were only the most obvious symptoms.

As my journey progressed, I began to hear the same phrase that the problem was: "muscular rather than structural." However, despite relatively normal imaging, the pain was relentless and my mobility had become incredibly limited. While it was encouraging to confirm there was no major orthopedic damage—the reality is that I concluded and began communicating that myself fairly early on but still had no answers.  Eventually, the missing piece came into focus. The muscle problems were the result of a neurological injury. The eventual diagnosis was Hemidystonia, a movement disorder in which abnormal neurological signaling causes involuntary muscle contractions, abnormal postures, and painful muscle rigidity.

Earlier in the process, I had also been diagnosed with Small Vessel Disease, despite having no previous history or traditional risk factors.  I believe that microvascular injury contributed to one aspect of my case that was particularly unusual. People with dystonia struggle with excessive muscle contraction, but I was also experiencing profound weakness at the same time. Restoring strength while gradually reducing excessive muscle activity has been essential for rebuilding balanced, upright posture. From that foundation comes something that many people take for granted but I had to fight to regain: the freedom to move.

Looking back, one of the most important lessons from this experience is that the core issue may not be easily detected by standard imaging or lab tests.  As I was referred from one specialist to the next who each performed their “work-up”, it became clear that siloed diagnostic protocols can leave little room to think about a problem holistically. That can make things especially difficult when physical problems are a multifactorial reflection of what's happening on a deeper level. Sometimes we need to be able to listen to both our bodies and inner guidance to lead our own recovery. Some may simply call that “listening to your gut,” which requires intact visceral responsiveness.