What would you do?

Over the past several years, I’ve been diagnosed with cervical dystonia, chronic motor tics, and functional neurological disorder (FND). My movement symptoms—specifically the cervical dystonia and motor tics—were determined by my clinicians not to be functional in origin. However, many of my other neurological symptoms were labeled as functional because my imaging and testing have remained normal, aside from elevated kappa free light chains and GAD-65 antibodies.

Since 2017, I’ve been tracking my symptoms, their patterns, and every appointment I’ve had. When I line everything up, my experiences and progression don’t fit the typical diagnostic criteria for FND. Instead, they seem more consistent with other neurological conditions—not the functional category. This mismatch has left me feeling confused, frustrated, and honestly a bit lost. I don’t feel that the diagnosis fully explains what I’m experiencing, and I’m worried that I’m not getting the treatment or investigation I may actually need.

I’m wondering if anyone else has been in a similar situation—where some symptoms were labeled functional while others weren’t, or where the diagnosis just didn’t seem to align with the pattern of symptoms. What steps did you take, and what helped you move forward?