Doctor Notes | A Medical Diagnosis of Psychogenic Movement Disorder

Texas Medical Center

Catch up on my story here!

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!

Doctor Notes | My EEG at Austin Neurological Clinic

This afternoon I had an EEG scheduled. I was not a happy camper. I admit that I absolutely detest all medical buildings and the people that inhabit them. Just thinking about going to one puts me in a horrible state of anxiety. Shout the word "Hospital!", and I'm bound to bolt out the door before the "p" sound creates the natural lisp sound in the word. When you've been to as many doctors as I have you tend to notice that most medical personnel are simply smart sheep. It sounds like an oxymoron, but let me assure you that it's possible to both be someone that is complacent and someone that is smart.

But, I digress. On my way to the EEG room I snagged a 'Neurology Now' magazine. I'm always on the lookout for information and when I see a free magazine like this one I take it so I can examine it later for sources. 

A portly man with a mousy brown comb over escorted me to the cluttered and slightly unseemly exam room with a cheap mirror bolted to the wall with plastic hooks and yellow fluorescent lights that instantly offended my eyes. He asked me to sit in a leather backed chair which was located next to a box of wires that were meant for my head. He began attaching them and the glue's chemical composition changed the entire smell of the room. My eyes began to water and I coughed. He paid me no mind and continued to apply the glue and attach a wire. I asked him to open a door and ignored me so I asked him again. He impatiently cracked open a door and continued with what he was doing. Bill had followed me into the room, but I told him to go sit out in the waiting room where he wouldn't get chemical poisoning. Yes, the odor and fumes were that bad.

My head pounded, the wires were attached and he asked me to lay down and covered me with a sheet. I was told I could lay on my stomach or my side or however I was comfortable as long as I closed my eyes. I lay as still as I could. It was uncomfortable laying there. I couldn't find a comfortable place for my arm or my hand. My back was doing that movement thing again and my right shoulder and hand weren't cooperating either. I was in pain, too, so that didn't help either. I actually wanted to go to sleep just so I could do something since I was bored sitting there without anything to do but sleep. Just as I was drifting off to sleep he woke me and told me to lie on my back. Then the strobe lights started. Omigawd, they hurt like a bitch. I am extremely sensitive to light. I thought I was going to start crying, but I didn't. I did, however, have convulsions. When it was over I slowly walked to the waiting room to meet Bill. I was exhausted and my head hurt and I felt like I was going to throw up. 

Bill got me a sparkling water and I looked at the Neurology Now* magazine I had picked up in the doctor's office. On the front cover the words, "Does medical marijuana ease neurologic symptoms?" popped out at me. 

Omigoodness! I didn't even read the magazine when I picked it up! What a happy, happy gift from the universe! The article discusses the promise of medical marijuana and a highly respectable neuropsychiatrist from a respectable university (I can't remember which one right now) states that marijuana shows much promise and there is much need for independent neurological research studies! I know it's not a coop, but it's a step in the right direction and that makes me KNOW that I'm doing the right thing. In my heart (and that's what's taking over these days) I KNOW that I am going to have a way better quality of life than anyone that chooses the ineffective, yet dangerous yellow pill road.

It's good to feel the certainty that I now feel. And it's good to remember that EVERYTHING happens for a reason. It gives me a little more peace to know that my journey will not just be a bit more secure, but  my step will be light as well!

*Neurology Now articles are available for free online and for your iPad. See the above link.

10/1/2014 EDIT: I received notice that my EEG was completely normal.

Doctor Notes | Eastern Medicine Kind of Girl

To prepare for my appointment with Dr. Georgette Varga, a movement specialist and neurologist in Austin, Texas, I wrote the following note and emailed it to her a couple of days ahead of my appointment.

Current Symptoms

Memory problems
 Weakness in both arms, L worse concentration
 Afraid of falling
 Anxiety
 Dizzy spells: happen when sitting/standing up
 Weight change: lost 20 pounds since November
 Vision changes
 Fatigue
Incontinence
 Pain level consistently between six and eight out of 10
Leg movements when going to sleep: slow movement has been happening since birth
Rocking since birth
Tremors
 Chronic Constipation
 Cramping in left and right arms, both shoulders and neck
Pain in left arm/chest
Feel like difficult to stop, difficult to start. Ex: projects

Things to Note:
Grandfather was a Korean vet who had diabetes, heart attacks, strokes, prostate cancer and Alzheimer's.
Father died of mass tumor in his body that caused surgeons to remove pancreas and part of his stomach. Died of septic shock and stroke.
 I was born in North Dakota where the Parkinson's test rate is higher than that of the rest of the country. 2, 4– D was sprayed on the field near the Minot Air Force Base where I was born.
 I've had symptoms since 2009. I've been off antipsychotics since 2011.
I am still progressing.

Research I'm sharing:
North Dakota Parkinson’s Death Rate :http://www.worldlifeexpectancy.com/usa/north-dakota-parkinsons-diseaseNorth Dakota County Map: http://www.ezilon.com/maps/images/usa/north-dakota-county-map.gifNutrients, Suspended Sediment, and Pesticides in Water of of the Red River of the North Basin, Minnesota and North Dakota, 1990-2004: http://pubs.usgs.gov/sir/2007/5065/Center for Food Safety’s Parkinson’s Disease and 2, 4-D: A Summary of the Evidence, May 2013-14: http://dow-watch.org/cms/assets/uploads/2014/01/24-D-and-Parkinsons-Disease-Summary-FINAL1.pdfPesticides Trigger Parkinson’s Disease: http://www.beyondpesticides.org/gateway/health%20effects/parkinson's%20cited.pdf
Agent Orange Use During the Vietnam War: http://covvha.net/vietnam-war-agent-orange/Veterans Exposed to Agent Orange in Vietnam & Korea: http://www.benefits.va.gov/compensation/claims-postservice-agent_orange.asp
Veterans’ Diseases Associated with Agent Orange: http://www.publichealth.va.gov/PUBLICHEALTH/exposures/agentorange/conditions/index.aspSymptom-relieving and neuroprotective effects of the phytocannabinoid THCV in animal models of Parkinson’s Disease: http://www.publichealth.va.gov/PUBLICHEALTH/exposures/agentorange/conditions/index.asp

We ran late to the appointment. It was not my intention to be late, but the universe had other plans. I'm trying to go with the flow, but I raced up the walk way because I hate to be late. 

That morning as I was dressing I had to remember that I was dressing not just for my doctor's appointment, but for a day in Austin which included dinner with friends later. I gazed lovingly at my heels and I felt disappointment because I knew that with my dizzy and falling spells that I should not be wearing heels. I expressed my woe to my spouse and he told me that he would be next to me at all times, not to worry. I smiled at him, delighted he understood. Giving up my heels would be a last ditch effort. I wasn't giving up just yet!

It was my high wedges that the doctor's assistant remarked upon when he saw me. I smiled, said nothing. Then the doctor came in. She asked me how I was doing and I blurted out that I was progressing. It had gotten worse. 

She asked about my arm and if I had changed my mind into having carpal tunnel surgery. I said nothing as she rambled on about how I could lose the use of my arm. 

I piped up in anger, "What difference does it make if it ruins the right arm? We have to know the cause. We can't just go and do more damage to the body by doing surgery."

She pursed her lips. I could see that I was frustrating her. I had become a belligerent patient. Oh my. Was I in for it!

She would not look at my research and insisted that I did not have Parkinson's. She wouldn't examine me either to notice my progression. I persisted in telling her what I had learned in my research about pesticides and Parkinson's. I held up my hand to get her to listen to me when she tried to bowl me over. I told her that my estranged sister had just contacted me and told me that she has the very same symptoms. The very same. From the cramping and tremors, to the storms, and to the severe cognitive dysfunction when it came to memory.

She responded that I don't have tardive dyskinesia and I don't have Parkinson's. When I persisted in asking her what I did have, she responded, "You should get a second opinion. I don't know."

Aha! We got to the root of the problem, didn't we? She doesn't know. No doctor knows. There are too many diseases that are unknown. Until medical science has advanced enough to readily be able to diagnose what I have I will kindly stay away from all western medicine. I'm an eastern medicine kind of girl, I guess.

Research | Self Diagnosis of Parkinson's Disease

I remember as a Bipolar patient that I was never supposed to question my doctors. Society thinks that doctors know everything simply because they attend college for eight years. Most people think that doctors have their patient's best interests at heart and some do, but most are more concerned with the bottom dollar than the patient.

My diagnosis has evolved over the years. It's not an easy thing to be a bipolar patient and even harder to be a misdiagnosed one. The drugs that they put you on dope you up more than illegal drugs and they pollute your liver, kidneys and brain like any other. I will go so far as to venture to say that antispychotics, antidepressants, and benzos are the kind of drugs that make you crazier than you were to begin with.

But, I digress. I want to share with you my most recent findings that suggest that what I'm suffering from was caused by a combination of GMOs and pharmaceuticals. Western medicine has given me the diagnosis of Tardive Dyskinesia, but I'm discovering that Parkinson's Disease is my true diagnosis. I'm self diagnosing myself. I'm aware that many people will think I'm crazy (what's new?!), but I say that I'm crazy like a fox. I'm not being a complacent patient anymore. I'm doing the research, standing up for what I believe in and I'm sticking to it!

Over the last six months my disease has progressed tremendously. I've gone from merely having cramping and pain (rigidity) in my left hand and arm to cramping and pain in the left shoulder and neck to cramping and pain in my right hand, arm, neck and shoulder. Since October I've developed severe dizziness from standing up (I've learned to stand up slowly, but it doesn't matter) that makes me feel faint and I've fallen a few times. Since January I've noticed a steady decline in my thought process and I find myself unable to finish my thoughts that are voiced aloud in conversation.

After researching pharmaceutical options (only two drugs for Parkinson's and one is an antipsychotic. We all know how I feel about those!) I have concluded that cannabis oil is essential for the future of my health.

Here are my educated reasons for my self diagnosis of Parkinson's:

1. I was born in Minot, North Dakota in 1974. In 1970, rapeseed began to be mass-produced in that region. Interestingly enough thereare more North Dakotans that have Parkinson's than any other place in theUnited States. The common herbicide used during that time was 2, 4-D. For those not in the know, 2, 4-D was an ingredient in Agent Orange that was used in the Vietnam war. The high prevalence of the herbicide led the Center for Food Safety's report detailing how the herbicide is the reason for the greater numbers of Parkinson's in the area. Pesticides and GMOs are a leading cause of Parkinson's. I read an article that suggests that the herbicide was over everything in the Red River Basin area and babies crawling on the ground were highly susceptible to poisoning from it.

2. At every appointment my neurologist, which specializes in Parkinson’s, has questioned why my illness is progressing when typical Tardive Dyskinesia patients don’t usually progress. In fact, they are usually all better within a couple of years after taking antipsychotics. I’ve been off antipsychotics since 2011. I’ve done some research that suggests that the antipsychotics just kicked in my Parkinson’s earlier than usual.

3. My body presents the following arguments: I have a tremor, rigidity and cramping throughout my body, andorthostatic hypotension which leads to postural instability (my blood pressure gets low and I faint or fall) with dyskinesia movements (looks like my left arm is dancing, uncontrollable), and I'm beginning to experience cognitive dysfunction (I can’t finish my thoughts that are said aloud in conversation). I have three out of the four defining characteristics that are necessary to diagnose Parkinson's.

4. Unfortunately, western medicine dictates that Bradykinesia, the last characteristic, must be present to diagnose Parkinson's. Many patients who are eventually diagnosed with Parkinson's suffer from all of the symptoms for years, maybe decades  before they actually get to the slow and jerky movements. Most Parkinson's patients are diagnosed at the median age of 67.

After researching pharmaceutical options (only two drugs for Parkinson's and one is an antipsychotic. We all know how I feel about those!) I have concluded that cannabis oil is essential for the future of my health. I'm taking steps to attain the substance legally since it is not legal in the state that I live in.

I have to move to Colorado and I'm partially unhappy about my decision. I have children here and it will tear me apart to leave them, but it is my only viable hope to living a pain free life.

I have an appointment scheduled in a couple of weeks to see my specialist, Dr. Varga, but I'm unsure if she can do anything to help me. She is one of the best neurologists in Austin. She's good at being a western medical doctor, but I'm not sure if she's up to date on cannabis research and that's the kind of neurologist I need.

I may not have a medical diagnosis of Parkinson's Disease, but I know what's going on with my body. I scorn all western medicine anyway. It doesn't matter what they say. It only matters if the cannabis oil works for my symptoms and it does and that's A-FUCKING-OKAY for me!

Wellness Journal | Stress & Asking For Help

I started my morning with Imagine Dragon's "Radioactive" blaring on my iPhone. I'm zoning out. I do this when I need to think or when I need to feel something other than I'm feeling. It's my therapy sans crappy ass people (also known as mental health professionals) who think they know what's best for you. People like that can get me in trouble. Hell, that's exactly why I'm in the trouble I'm in now.

We saw the movement specialist doctor yesterday and I'm extremely saddened by the appointment. My boyfriend saw the appointment as positive and I just didn't which just begs the question, "How depressed am I?"

At this point, "Superman" by Lazio Bane comes on my iPod. Remember the show Scrubs? Then you'll know exactly what I mean. It's the shuffle on my iTunes and it's the universe reminding me that I'm not alone. I have a wonderful support system. I have friends and I'm in love with a wonderful man.

I tend to think that I'm alone in this life and that I can't depend on anyone but myself which creates resentments that lead to more anxiety. It's time to let go and let the universe do for me. It's time to implore a little faith. Faith in something other than myself. I'm letting go. It's not a choice anymore.

The doctor told me that there's little I can do except take psychiatric meds. I agreed like a good little patient when I was there, but I have to say that I felt so defeated in that room. I felt like this was it for me. I thought that it was just what the universe was bringing my way then I should listen. It's good to listen, to be mindful of the moment. I get that. But when tears flow there's a reason for that, too. At that point the universe is giving me a choice.

Sometimes it will take me a full day to figure out what I need to do. Sometimes it's only minutes. That's best for me because if it's more than a few hours I start getting really sad. I'm sad because I start feeling like there's not another solution. It takes me a while to process my own feelings, but when I get to that point I have to go into my cocoon. I need to be alone. I wanted to be alone yesterday on the hour long ride home from picking up a friend at the airport after my appointment. For hours all I could think about was that I was in a pickle. By the second hour I was freaking out a little bit. I turned on my iPod and tried to zone out and stop thinking about it, but my brain wouldn't let me be.

We finally got home and I thought I would be able to relax, but we realized we were out of marijuana (which is a natural medical necessity for my condition, google it) and then had to go take care of that. I tried to be socialable, but after a while even my laugh sounded fake to me. I had lost the ability to feel joy.

Then everything started annoying the fuck out of me. I got angry. I was angry because I was in this fucking situation in the first place and then everything else annoyed the fuck out of me, too. In one instant I was fucking angry and in the next I was very, very sad.

How had this happened to me AGAIN? What did I ever do to deserve this? I have lived my life as a pretty good person. I'm not perfect. I know I come off like I don't give a shit about people, but that's a defense mechanism because I care more about everyone and everything than probably anyone you would know. I care so goddamn much that it literally hurts me.

I worry constantly about everyone and everything. Everything from I hope that my love's sister is feeling no pain today to wishing that my girls can be as happy as possible even if I'm not with them to feeling pain because I can't be there to hoping they understand someday why I'm doing this. Okay, well, I do think about everyone. Just today because I'm still a little sad I'm wallowing a bit. But how can I not?

Stress is making this disorder worse. I got that from the lady doctor. I got that loud and fucking clear.

When I get like this I have little tricks I learned along my mental healthcare way. This is the way that I cured myself when I was misdiagnosed with Bipolar Disorder and all those pills had poisoned my mind: I listened to a shit load of inspirational music. I have always loaded my music onto my iPod, picked songs and hit shuffle so it would randomly select music in my playlist. I have so many different kinds of music. Everything from Britney Spears to Prince to Enya and everything in-between. So my feeling is that whatever message the universe wants me to hear is the one I'm going to experience this morning.

I also donned a heavy winter coat (at least for Texas) and lay down on the grass and looked up at the dark morning sky. It was quietly beautiful. The sky was a kind of cobalt hue that made me gasp because it was so breathtaking. The moon was a sliver of a crescent and the little dipper was right where I like to see it. It seriously grounded me. I felt rejuvenated. I slowly started letting go of my fears.

I can do this. I can do this without those drugs. I can. I have to be dedicated, but that's where I feel stuck. I need some help. I need help. I hate to even type that. I don't ever like to ask for help. I always want to be a superwoman and do everything myself, but I can't do that anymore. Those ways do not work and they need to be reevaluated.

It's time to remember that there is no box. I'm not thinking outside the box anymore. I'm remembering that that notion is bullshit. There's no fucking box. My mind refuses to be constrained by norms. It's powerful and it's time to use it. It's time to utilize every fucking tissue in my brain. I have to get it fired up. I have to get it fired up. I have to get it fired up…or my soul will die.

So that's where the other part of my plan comes in. I have to be my own holistic coach. I'm eating a clean organic diet. Now I need to add in more. I need to address my mental health with meditation, nature, and living in the moment. I need to ask my friends and family to gently remind me of it so that when I get tired they will lift me up.

I implore the universe...who's going to remind me that I'm not superwoman?