In November I saw another doctor. By chance my doctor rescheduled my appointment to March 2017. Fed up, I wrote a complaint email and surprisingly I was asked if I would mind seeing another doctor. If my insurance covered it I would do so with joy and so they scheduled me in with another doctor.
I thought I was going to get a second opinion. I was nervous and excited, but when the time came and I saw the “other” doctor I realized he was my doctor’s assistant. I was disappointed that it wasn’t a new doctor but still happy it wasn’t the original. The original was a pompous ass. This one, the assistant, was by far much nicer than my doctor. He definitely had a much better bedside manner. Unfortunately like my doctor, the assistant too had his mind made up about what they believe I have, psychogenic dystonia. What is psychogenic dystonia? In short, it isn’t organic dystonia.
Instead what they claim I have is stress related, but not the stereotypical stress he assured me. And he confirmed my symptoms are real, but they are caused by stress not because of rewiring in my brain like organic dystonia. Even when I argued again about my healthier life style again he stress perhaps and underlying issue in my life I am not aware is causing me such pains, and it could be causing me to have dystonic symptoms. Their proof…how inconsistant my symptoms are, constantly changing in severity, body parts and pain. It is important that I accept it he insisted like my other doctor told me months ago. Accept the assistant told me with more compassionate eyes and less narcissism than my doc. Anti-depression medication could help ease and clear up my mind so I can figure out he told me with kind but confident eyes. He implored me to try, to at least try it. I almost fell for it. I almost gave in. I mean who am I? I’m just a mom. A woman with limited medical knowledge. I’m not a professional or an expert in anything, except….except I know my body. I know my body I looked at him teary eyes but confident.
Thanks to my friend sitting next to me who asked me to ask him what the differences where between organic dystonia and inorganic I asked him to list off the differences to me. So he kindly did and true my kind was different from organic and perhaps it could somehow still be stress related, but still….how in the world can my stress be so different from someone else that at times I can barely walk, talk, eat, move. Is it some sort of chemical imbalance, something. It can’t just be stressed.
Stress is powerful, it can really affect the human body and mind he explained. Yeah, I get that I get that, but how then sometimes at my happiest, least stressed and physically healthiest am I at my worst with dystonia? Why do I feel this constant numbness in my muscles? Why is it the more fatigued….I attacked him with questions. Naturally I grew defensive. Naturally I tried hard to hold back my anger and my tears. Naturally my emotions spewed, but still he asked me to try. I asked him about second opinions about getting my muscles tested, my muscles had never been tested. He said I would need to see a neuromuscular doctor for that but they would do test after test after test and he didn’t want to see me go through that. He just wanted me to accept it and try the medicine. I could go on about figuring out why they couldn’t just test my muscles and what the differences in specialties are and why my info couldn’t just be forwarded and how I would still have to wait months before seeing another specialist and how my insurance may or may not cover a second opinion or how thanks to the rising premiums I may not even have insurance next year, but instead I’ll explain how I finally reached a point of acceptance. Acceptance that no one knows what I really have and doctors are still trying to figure it all out and at least I am not dying and most of the time I can walk and eat and breath like a normal person so I quit seeing doctors for now. I sat there and accepted that.
Then I finally looked at the doctor’s assistant and said to him, I guess I will just have to live with whatever this is because I can’t accept what I don’t understand and I’m not going to take medication for something I’m not even sure your sure of and you can’t really explain as to why I have other than to call it stress. My words came out a lot choppier and less confident, but that’s the sum of what I meant. He looked sad for me, sorry for me. He wanted me so bad to just give the medication a try. I so badly wanted him to look at me again, look outside the box, start from the beginning. Was there something they missed, but there minds were made up and I had limited resources with my crappy health insurance and limited supply of doctor specialist in this field and even fewer options in the treatment possibilities. Here take two of these blue pills and call me in the morning.
Its been over a month since that last visit to the doctor. My symptoms have considerably subsided and I am pretty sure now it’s because I am almost at the point of no exercise. I still get in a workout at least 45 minutes about 3 times a week. If I push myself any harder I begin to lock up or spasm. I have been testing this for over a year now. Due to my lack of excercise I have gained another 5 pounds. Between school stress, life stress and weight gain my mood swings are on the rise and my self-esteem is shot. I mentally feel better when I exercise, but physically my body will spasm if I push myself to hard. Catch 22 right? Maybe one day a neuromuscular doctor will read this and treat me pro bono. I can dream right?