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My Story – Hayley D

I went 3 years without having a diagnosis for Functional Neurological Disorder. I have a loaded family history, which explains my predisposition to this disorder. My mother’s side has OCD, my brother had Tourette’s, and my father’s side has anxiety and depression. I inherited all of the above- OCD, a movement disorder, and the mental illness’.

When I was 17, I started experiencing chronic dissociation (specifically depersonalization), visual problems (everything seemed far away) and mild OCD (primarily symmetry and organization) on top of my already present depression and anxiety.

I know that FND does not have to be prompted by psychological stress, but I believe this was the case for me. I won’t go into the stressor that catapulted me into FND, but just know it is relevant for my testimony.

On June 11, 2013 my Functional Movement Disorder started. It started with my neck being like a bobblehead. Then I got tremors throughout my body, myoclonus (involuntary movements) throughout my body, non-epileptic seizures or dissociative attacks, a handful of fugue states, memory loss, sensory symptoms such as brain shivers, migraines, complex vocal tics where I would repeat phrases or songs for hours in my OCD fashion, and gait problems (particularly knee buckling and dragging foot) which prevented me from walking.

It’s so difficult to live with a disorder that is episodic in nature but devastating in each episode. Because we can be “normal” so much of the time, and then disabled other times. It’s almost like because it’s not chronic all of the time, people have a harder time believing we aren’t just convincing actors crying out for attention.

FND patients screen normal on neurological exams and MRI’s. Hence, more frustration. But it’s also a diagnostic lead, because when it’s not dysfunctional, it’s functional. But, knowledge about this disease is scarce, even among neurologists. I’d like to recommend UCSF Neurology Center’s Surgical Movement Disorder Clinic, in San Francisco, California, as a place people can come to for a proper diagnosis and recommendations for treatment. It helped me so much, and I’m better for it.

Best of luck to all you with FND! And I hope I didn’t bore those of you passing by this blog post.”

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