Dr. Hope didn’t see me for my appointment. One of his colleges did. I found out the day of my appointment, during the ride downtown to the doctor’s 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 more, but I didn’t want to wait any longer. I proceeded with the appointment and my boyfriend, who was with me agreed it was best not to reschedule.
The doctor’s assistant saw me first. She was young. She asked a lot of questions. She didn’t take down any notes. She didn’t even have a computer with her to type up my answers to her questions. Either she had an amazing memory or there was a recorder in the room I didn’t know about.
About 10-15 minutes into the visit my nerves must have gotten the best of me and triggered the spasms. The doctor’s assistant was happy to see this (in a clinical manner) and went to fetch the doctor. I will call this doctor, Dr. Matter-A-Fact. By the time she came around I was already having trouble speaking, but my episode still wasn’t as bad as it could get. The doctor proceed to check my reflexes which made the symptoms worse and then she flashed a flashlight in my eyes and I just hated her for doing that.
She sat down in the stool and proceeded to tell me as I struggled to breath and as the pain set in deep that she agreed with my previous doctor. She continued to tell me there was no cure for what I have, but that my symptoms are more scary to experience or for my loved ones to see than they are harmful. She expressed I would not die from them. She then went on to express that she believes it is psychogenic and that perhaps it could be an underlining issue or stress that is cause of it. She said no one really knows for sure. . She recommends making an appointment to see a psychiatrist and she tells me to look for one that does cognitive behavior therapy. She said a therapist is my best option and so on and so on…
By this time I tuned her out. She become an noise in the background as she answered my boyfriends questions and my shortness of breath grew louder and louder in my ear, tears rolling down my cheeks and my jaws locked so tightly shut I felt ache in the roots of my teeth. What was the point of listening after all. She pushed my problems on to someone else. She saw me once and that was enough in the span of less than half an hour and that was enough for her to throw her expertise as a movememnt disroder specialist in my face.
With my jaw locked, I couldn’t defend myself. I couldn’t ask questions. I couldn’t beg her to see me at least 3 or 4 more visits before she made her quick diagnosis and pushed me on to someone else to help me solve my problems. My muscle locked and twisted as I sat crooked in my chair trying to force myself upright I could barely breath. My boyfriend continued asking questions, but all I wanted to do was get up and run out of her office, except I couldn’t.
She spent less then half an hour with me. She watched videos I previously submitted prior to my visit. She looked at my file…she’s an expert in this. Who am I to argue right?
She didn’t see or hear anything else. She didn’t take into account that when this began happening to me almost 4 years ago 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 this mattered.
I went home and I cried for days. I hardly said a word to my boyfriend. 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. For once in all these years that I have been fighting to find a cause or a cure, I lost hope. Who am I in comparison to experts?
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. Is it a chemical imbalance. Where in the brain is the rewiring occurring? I know a lot of people who have been through worse trauma then me. Why aren’t their brains 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 because movement disorder specialist, at least where I live are just pushing us onto therapist and washing their hands of it.
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.