My name is Kerry Halk and I am 34 years old. This is the story of my journey with Functional Movement Disorder.
My symptoms began late February in 2014. Prior to this I have had a history of seizures when I was younger, In addition to a lengthy history including major depressive disorder, Anxiety, ADD, and alcoholism.
In 2014 I first began to notice cognitive impairment while working as a front desk agent at a hotel for several years. I suddenly began to struggle with everyday tasks that I previously did with ease. Despite providing my employers with a doctors note acknowledging my impairments and explaining I will go for further testing I was later fired regardless.
In addition to the cognitive impairment I would also squint my left eye constantly and was also told by family that my left side of my face drooped a bit.
At first I had gone for Neuropsychological testing which later determined I had Aspergers with an overlap of right hemisphere learning disability. They are both very similiar.
My symptoms continued and progressed. I was having involuntary movements seen in cervical dystonia as well as dyskinesia. The dyskenisia was a concern because it can be caused by long term usage of certain medications for depression and other mental health conditions. I had been on a lengthy list of medications since the age of 18. As time went on I had developed an adult onset stutter and found that I was unable to relax my muscles after contracting. This would lead to difficulties walking and limited physical activity.
I must tell you that prior to my onset I am an artist. My ability to use my hands became impaired as well as some memory issues.
I had previously quit drinking two years ago but do have a history of addiction, seizures, and head injury due to my falls from seizures. All of which should have done some type of damage to my brain function. Nonetheless my first neurologist said my MRI was completely normal. How could this be? No other testing or imaging was done any further.
As time passed with my future uncertain I had prepared myself for the worst case scenario. With the fears of further impairment I began a video diary of my symptoms. I had also customized my phone, macbook, kindle,and the TV to all sync together. This enabled me to switch from one device to another as the day continued and my fine motor skills became more difficult and my vision worsened throughout the day. I had adjusted all my controls to type in shorthand as well as keep my medical history on my computer as well as phone. I would include all doctors reports, MRIs, Lab testing reports,and any personal data that I could hand over to a doctor on the very first visit. This saved me weeks to months providing them with all my data in a matter of one day.
I became my own advocate and researching every symptom, medication, including watching videos of each symptom and potential diagnosis on youtube. This allowed me to see if my symptoms were similar to others which gave me a visual understanding. Ive spent hours listening to medical journal podcasts.
To this date I have seen a neurologist, 2 neuropsychologists, movement disorder specialist, rheumatologist, cardiologist, pain management doctor, Gastroenterologist, and have done physical, occupational, and speech therapy.
I was insulted and felt judged when my doctor told me I have a functional movement disorder possibly caused by anxiety. I have had anxiety my entire life…this was not it.
I later began to have myoclonic leg jerks at night and recently began having ringing in my ears after standing followed by a dramatic drop in blood pressure resulting in myself losing control of my muscles and falling. Apparently if you fall backwards your fine, but because I fall on my knees (to prevent head injury) this causes a seizure like effect due to lack of blood flow in the brain.
One piece of advice I have is to allow yourself to be grateful and laugh at yourself. After I was initially told there was no brain mass or Huntingtons disease I figured I eliminated the two worst case scenarios and no matter what my final diagnosis is I am grateful its not those two. I then considered this a blessing.