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Tuesday, September 30, 2014

Doctor Notes | A Medical Diagnosis of Psychogenic Movement Disorder

Texas Medical Center

We awoke super early to travel four hours to go to Houston for a last minute doctor's appointment with the best neurologist in Texas. We packed all my pillows and electrical devices and headed out the door. I was a nervous wreck.

I did my best to stay calm. I smoked a lot of our delicious, medicinal quality Berry White because I didn't want to take my cannabis oil so that my tremors and tics would come out for my medical examination. We got there just in time to have lunch at Chipotle and eat a lunch out door listening to a disabled man play jazz on his horn. I ate a taco and a half and then threw the rest away. I was too nervous to eat.

A disabled man plays a little jazz for money on a street corner. 

We were in the middle of the Texas Medical Center which is huge with very tall buildings and lots of pedestrians and traffic. We had a bit of a difficulty finding where we needed to go. We entered in at the address given and then had to take the elevator up the crosswalk, walk into another high rise building and then we took the elevator up eighteen more floors. When we got off the elevator we walked straight up to the reception desk. Apparently this doctor was making enough money to afford to rent the entire floor of offices. The waiting room was large enough to fit 100 people more than comfortably. The chairs were plush and we sank into them as we waited. I momentarily thought about how much money all of this took to accomplish and how Big Pharma was making a killing off of this doctor.

We were efficiently ushered into the back offices by the nurses that took my weight measurements and checked my blood pressure. They were all up in arms about how my blood pressure would not read electronically. I told them that a manual one was needed as this always happens, but they insisted so that made me so nervous that, when they finally got a reading, my blood pressure was through the roof. It should've alerted me that all of that drama was merely 'forecasting' for the rest of the appointment.

We waited for five to ten minutes in their gigantic waiting room once again before an Indian doctor came out to greet us and took us back into her office. The large picture window captured my attention. The view was spectacular. I tried to make small talk with the doctor about the glorious view, but she said she didn't even look at the view (I began to think about why I would go to a doctor that didn't even appreciate this incredible view!), pushed my small talk aside and got to my medical history. During questions of when my symptoms first began (and all those tedious questions I have to answer every single time I go to doctors) I started to become extremely annoyed. I wasn't sure how much she was paying attention, but she repeated everything back to me accurately. After an hour we were sent to the waiting room again to wait to see Dr. Jankovic.

Dr. Jankovic is supposed to be the best neurologist in Texas. He has written many, many books on movement disorders and I was interested in seeing him because of it. We waited about twenty minutes before we saw him. He was short man with glasses and had a balding head with tufts of shocking white hair against his tan skin. He had kind eyes and was quiet as his assistant told him about my symptoms. He watched me as he listened to her. My body was acting up just a little bit, but not as much as it has in the past. I still had some neck tics and tremors. He began our discussion by asking me what tests I thought that I needed to have next. I told him that I thought that a Huntington's DNA test was in order and he agreed. After speaking with me a bit about what I was most concerned about (my short term memory loss, bad concentration skills, and forgetting words) he proceeded to tell me that he thought that my movement disorder was psychogenic, not Huntington's or Parkinson's Diseases.

My eyes grew big in amazement as he spoke. He said that he thought that stress was what was causing my movements. I grew quieter and quieter. This was the very best doctor in Texas and he was basically telling me that I was crazy. I waited until he left and then tears ran down my cheeks. I had been waiting for so long to hear something, to know something and this is all I had to show for it now. I was very distraught. This was the second time in two weeks that I had heard this same thing. I had just seen Dr. Verona at the Austin Neurological Clinic and his diagnosis was also psychogenic. In less than two weeks I had TWO neurologists tell me that all of this illness is all in my head! Haha! Of course it's in my head! It's neurological, BUT I'm not ready to throw in the towel and jump on the crazy train because I'm NOT crazy!!

This is not stress. This is REAL and it's GENETIC. My sister and I have extremely similar symptoms. My mom falls all the time, has horrible short term memory loss and cognitive problems. You can't tell me that stress is making us all sick. Basically, this doctor is just like every other doctor out there. He doesn't know anything so he blankets it with the term 'Psychogenic Movement Disorder'. The only thing crazy here is that western medicine cannot keep up with the increasing undiagnosed disorders out there. I've found so many undiagnosed neurological patients in my research and it's just crazy to say that we're all crazy!

After crying for a few minutes my tears dried up. I was not going to cry about this anymore! I am pretty okay. I'm good. I know I'm not wonderful, but I'm okay. I know my illness is progressing, but I do have a treatment plan that I've developed and I'm going to keep going. That is my purpose and that is the plan and I'm sticking to it.

Once I calmed down a bit further I realized that I had gotten exactly what I came for! I didn't hold much hope that this neurologist would be able to give me a diagnosis, but I did get the Huntington's DNA test, (that will definitively answer whether or not we have that and that's the scariest thing my sister and I could have) so I'm glad I got my blood drawn for that test before we even left the fancy office. The test results will be available in 6-8 weeks.

Bill and I left the office hand in hand and we were going to drive home, but decided to stay and have a date night in Houston. Bill was so great the entire day. He got off of work at the last minute so we could go. He spoke up during the doctor's office. He was my champion and I gazed at him as we drove down the freeway. I just wanted to spend more time with him and only him, so we put down our phones and spent the night lost in each other. We ate a lovely meal and watched a hilarious comedy in a mostly empty theater where our laughter rang loud and free. All in all it wasn't too shabby of a trip at all! I got what I wanted. I hope Huntington's is not what my sister and I have, but you know what I've decided? I'm DONE with all western medicine and it's uneducated doctors! Answers are overrated. Solutions are not!!!

I know there are many that are outraged at the medical system on my behalf. I think it's very sweet and wonderful that so many people have taken me into their hearts, but it is time to let go of the notion that only western medicine can help me. I have much still to discover, but eastern, holistic, and cannabis medicine are treatments I know will help me. I may never be cured of this neurological disorder, but I will do all I can to ease my symptoms and have a good quality of life. Do not cry for me, my friends! I am well, I am happy, and I am passionate about life. I am going to heal my life. I am at peace!

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