The good news is that today, after months of waiting to see one, I was finally able to see a movement disorder specialist. As expected the moment I opened the door to my boyfriend’s dodge truck to hop out and step down on to the parking lot and then took a step forward, my left leg began to twist in and buckle. I’ve noticed that more often than not my spasms can be triggered by major visits to VIP doctors. The closer we got to the office the more I twisted and spasmed. I also noticed I began to walk slower.
On the bright side, my randomly visible symptoms would be fully visible to the doctor today. For me this was proof to him that this wasn’t in my head, that I am not making this up. In fact for the first time in over a year I was put in a wheelchair again. The doctor’s assistant called for a wheelchair for me to use as we transferred rooms because he was terrified I would fall again as we walked to it. Just moments before, as I tried walking to the next room (the one we were in was too hot for the assistance’s comfort) my left leg turned inward and I fell to my knee. Ouch!
So, in a wheel chair I went, to make him and my boyfriend feel better. Me, I had to swallow a lot of pride again. I would have preferred just walking backwards, but I could see the worry on their faces and in their demeanor. Before I was wheeled into the new room he wheeled me to the video room. He wanted to take advantage of the fact that my symptoms are visible and record them for the doctor. I signed a consent form to allow doctors to use my video for case studies and documentation. The assistant asked me to raise my arms, move my legs, try to walk etc. As always my left side decided to be rebellious and embarrass me, twisting, locking and the wiggles…oh they only got worse. I was then wheeled off again to the new cooler room.
In the new cooler room that he was not used to being in, the assistant fumbled with the mouse cord and explained how rarely he was in those rooms and that the others were occupied. He continued on and asked more questions about my symptoms, my history and so on. He noticed my tremors, asked about the spasms and then finally got up to do some hands on physical test. He used that tool doctors use to check for reflexes, a silver tiny hammer, and taped both my right and left limbs in different areas, also checking for my ability to feel temperature. My right side handled it all like a champ, my left side went into spasm after spasm. It was torture. Toward the end I even felt a charlie horse on the bottom of my left foot and in my ribs….All of it sucked royally. Did I mention the wiggles/tremors had me in constant movement? It really takes a toll on the body to move uncontrollably for so long. I was so exhausted after all of it and the the tears… I tried holding back the tears several times. I wasn’t always successful, especially not in front of the video camera, but I tried.
Finally, he told me to rest and wait and try to relax if at all possible. He said the doctor would be in a few minutes. In a few minutes the doctor was in. The doctor, from this very prestigious medical place I have heard raves about, walks in and introduces himself, sits down at the computer and listens to his assistant reread all the notes he had just taken from my answers to his questions. He reads the notes out loud in front of us, but for the doctor as the doctor writes scribble notes on the margins of some printed sheets he had in front of him. I couldn’t make out the words of the writing and I gave up when the wiggles started back up. The doctor did a few double takes in my direction. When his assistant finished reading the doctor turned to me and asked me if there is anything else that was left out or that I need to add. I couldn’t think of anything. The doctor asked me to extend my arms. My left arm was back in a spasm so I needed to use my right arm to lift it. He asked me to walk across the room. When I couldn’t walk forward, I asked if it was ok to walk backward. I did that earlier for the video too. They were both surprised by it and asked me how I discovered I could do that. I told them about the research I have done and the story about the female marathon runner I came across. She learned she could run backwards to keep going. I figured I could try walking backwards. It worked for me. I told them I researched what I could to learn as much as possible so I could be as functional as possible. They agreed with the idea. A few more questions and test were done. Of course the usual questions about medical history were done.
The bad news came not when he confirmed that he believes I had dystonia, but when he told me the type of dystonia he thought I had, psychogenic dystonia. It hit me like a punch to the face. I really struggled with the idea. Silently I agreed when he said it is much better than having any form of brain damage or something worse, but what wait WTF?!!!
As respectfully as I could I disagreed with him. I told him I do yoga, martial arts, I eat healthy, I exercise, etc. Yes, I have stress, but who doesn’t. He rebutted that all my symptoms point to psychogenic dystonia. He pointed out that some people have underlining stressors or depression they aren’t aware of. He sat up proud and let me know he has been doing this for 40 years and he knows what it looks like and he could refer me to other doctors or I could get second opinion, but in his experience his patients who have accepted the diagnosis get better faster and those who don’t accept it don’t get better. He continued explaining in a very blunt and honest fashion that it would be wise for me to accept the diagnosis so that I could get better. He then said he was going to prescribe an antidepressant for me. I could choose to take it or not. I tried staying calm and tried to respectfully argue that I wasn’t trying to ignore his 40 years of medical experience and yes I am stressed, but again who doesn’t have stress in their life. Unlike most people that do though, I actually follow the right steps to deal with it. I repeated my list of healthy living again (not extreme healthy living) and continued with, if I have any depression it is because of the dystonia getting in my way, not the other way around. I even mentioned that I was talking to a counselor since my divorce to help me cope…And before I could finish my statement he just cued into the word divorce and used it as ammunition to confirm my stressor….He didn’t wait to hear how long ago my divorce happened or how I am happier now than I was when I was married or about all the good things that are happening in my life right now, including my sweet boyfriend. So, I pushed through with questions like, what else is someone suppose to do to get rid of stress? Again who doesn’t have stress and why do episodes of dystonia happen when I am at my happiest like during great sex, spending fun time with my family, or during martial arts class (my best de-stressor). He said “good questions”, but he had no answers. He could refer me to a specialist that deals with my form of dystonia and to psychologist, if I need he repeated. He stuck to his belief of what I had, wished us a good day and suddenly I felt myself fuming. I wanted to say, “F! U! you stupid narcissistic doctor! I am not a freaken number. I’m real you ass! This stuff that’s happening to me it’s real! I have no control over this. I don’t even know when it is going to happen”.
A few minutes later his assistant came back in and asked me if I had any questions. I stayed as calm as I could if for no other reason, but because my stupid Obamacare government insurance for which I am lucky to have, but unlucky enough to have to pay $300 a month only covers this medical doctor. I am stuck with him! I cannot piss him off. Right now he is like a God to me. A God that I strongly believe has misdiagnosed my dystonia and there is not a damn thing I can do about it right now. If I don’t take the antidepressant he will blame my continuing symptoms on my lack of following his advice when I see him in 4 months. That’s right I have to wait another 4 months before I can see him again. If I take the medication and he is wrong than I am on another set of meds that are filled with chemicals not natural to my body and not needed by my body. So much for not doing drugs in high school. Now, I will be a walking freaken pharmacy. Did I mention, in some of the research I did certain medications, like antidepressants are the cause for dystonic symptoms. I feel like I am damned if I do and damned if I don’t. That’s a stressor in it of it self and I didn’t need it. Thanks doc!
But what if by some chance he is right? Does that mean I’m crazy and I have been doing this to myself. That’s freaken crazy! I’ve been on depression medicine before. Almost 10 years ago when my husband (ex now) was doing months of training to be deployed to Iraq not too long after. Who wouldn’t be depressed. Geeze give me a break. I was morning his absence and possible loss, not to mention I had two kids to take care of on my own. That’s more of situational depression. It isn’t permanent if taken care of. Yes, our marriage had already been on a rocky road for years, but again situational. So yes, I was depressed and I sought help and I was not ashamed and I took medication to help because exercise and eating healthy was not enough to keep me happy and sane. I was told it was a chemical imbalance in my brain and the meds would help balance it out. The medicine did help, but today…I am not depressed not in anything except maybe the trouble that dystonia is causing in my life. There is no shame in admitting depression. If I felt I had it I would admit it and take care of it, but I am not depressed. I am pissed! And if this has to do with stress, well shit… aside from doing what I am already doing, what else am I suppose to do.
Say the doctor is right and I have depression and anxiety and/or stress why do I have dystonia too? What in my body is saying, “oh! you can’t cope like other people so let’s make life more miserable for you and cause you to twist and wiggle in pain so much so that sometimes you will end up in a wheel chair. Oh oh oh and just to make it all the more confusing lets just do it on your left side”. Ahhhhhhh! Damn doctors and their 5 minutes visits with us!
I am home now. I am going to curl up into a ball under a blanket on the sofa, in the dark closes the blinds of the living room, binge eat fruit (i have no junk food in the house), binge watch mystery, crime investigation, and land invasion sci-fi, feel sorry for myself, make myself feel better with Kevin Hart comedy clips on Youtube, cry a bit, confirm my clients for tomorrow, maybe do a few chores, maybe look up scholarships for school and then do more research on what I have and video tape all of my dystonic episodes from now on. Then I am going to bombard the doctors inbox with videos. Yep that’s my plan.