Dr. Hope didn’t see me. One of his colleges did. I found out the day of my appointment on the ride downtown to the office. I guess they didn’t understand that I only wanted to see Dr. Hope. It didn’t matter. If i rescheduled I would have to wait another month or so. I didn’t want to wait any longer. I proceeded with the appointment. My boyfriend was with me.
Her assistant saw me first. She was young. She asked a lot of questions. She didn’t take any notes down. She didn’t even have a computer with her. Either she had an amazing memory or there was a recorder in the room.
About 10-15 minutes into the visit my nerves must have gotten the best of me and the spasms began. She was happy (in a clinical manner) to see this and went to fetch the doctor. I will call this doctor, Dr. Matter-A-Fact. I had trouble speaking but still it wasn’t bad. The doctor proceed to check my reflexes and that made the symptoms worse and then she flashed a flashlight in my eyes and I just hated her.
She sat down in the stool and proceeded to tell me as I struggled to breath and the pain set in deep that she agreed with my previous doctor. She continued to tell me there was no cure. that my symptoms are scary but i will not die from them. That perhaps it could be an underlining issue or stress that is cause, nut no one really knows for sure, but it is definitely psychogenic. She goes on to explain that cognitive behavior therapy and a therapist is my best option and so on and so on.
As she spoke I couldn’t defend myself. I couldn’t ask questions. My muscle locking and twisting and I could barely breath. My boyfriend tried to ask some questions, but i tuned him out as I did her after some time. I didn’t want to hear it anymore. I wanted to get out of there.
She spent less then half an hour with me. She watched videos I previously submitted. She looked at my file…she’s an expert in this. Who am I to argue right?
It didn’t matter that when all this began happening to me it was the happiest time in my life. I was out of a bad marriage. I was in the middle of going to school to pursue my dream job to make a better life for my children and myself. I had a lovely man in my life. I was the healthiest and strongest I’ve been in many years. None of that matters to these doctors.
I went home and I cried for a few days. I hardly said a word to Jacob. He wanted to talk about it. I didn’t. I just wanted it to all go away. I wanted to pretend i didn’t see that doctor, that she didn’t sit there calmly diagnosing my future. I lost hope.
Shockingly I also barely had a spasm during this very depressing and stressful state of mind.
About a week passed of wallowing in self pity and then I grew tired of myself. i began to research again and I came across two website neurosymptoms.org and FND hope. It was the best information that I could have come across in a long time. Psychogenic dystonia is often also termed functional dystonia and something else I can’t recall. There is controversy of which to use because it is not yet clear why “this non-organic” dystonia happens, but it is possible to have the symptoms without stress and it is also possible to have it because of past trauma. There is a movement happening to correct the terminology to functional dystonia in the DSM-5 diagnosis book so that patients receive more than just psychological treatment and doctors don’t just push us off onto a therapist when they don’t know what to do with us.
With that said i understand now that i do have functional dystonia (I refuse to call it psychogenic) but I do not agree with the idea that it is current stress. is it possible that my past trauma could have rewired my brain? Yes! That I can accept. But I still want to know why my brain rewired. I know a lot of people who have been through worse trauma then me. Why aren’t their brain rewired and their bodies locking and twisting?
It basically comes down to this. There isn’t enough money for the research to be done to discover why this is happening. Until there is enough money research wont be done and all of us with functional dystonia are stuck with two options, experimental drugs and a therapist.
I know if I don’t at least try the route the doctors are asking me to take, they wont give me a second look. So, I am in therapy. I also went back to my neurologist. The one doctor that actually paid attention to me and gave the time of day. He wants me to try medication to see if it will help change my brain chemistry. So, currently I am looking for a psychiatrist.