Do I Really Have Parkinson's Disease? The Fear of Misdiagnosis

It’s been a year, maybe a bit more, since I decided to pursue getting a diagnosis from whatever was wrong with me. I was weak, I was dropping things. I couldn’t lift glass containers without great effort. I began slurring my speech. My migraines became worse. My anxiety skyrocketed until I was having panic attacks at the store, at my school and due to loud noises. I would sit on my kitchen floor wondering if I was going “crazy” or if my body was betraying me.

What is Parkinson’s Disease?

For a long time, I thought I had fibromyalgia, or perhaps multiple sclerosis because of the nature of what was happening. I had trouble walking. Then I had these strange tics that started happening. Arms flapping, head bobbing. So I was like, “What, is it Tourette’s?” I was lost, confused and uninsured.

Things got worse when I collapsed in class. I had a seizure, some think. Others don’t have an answer. I had no clue. At all. I ended up in the hospital but was so drugged up that I couldn’t communicate with the doctors at all, and none of my family was close. They couldn’t speak on my behalf.

My mother came down. I remember my hands became like claws sometimes. I called it my T-rex arms because my arms would be so curled into myself and my fingers, claws. I laughed a lot in those days, playing it off. Keeping it light.

I managed to get to a clinic that got me to a neurologist. Eventually. But insurance is still a weird issue. And because of how I am being aided, I can’t see just any doctor I want. So, I go to this neuro, and he does the tests for epilepsy. They come back negative because they can’t force a seizure. But the whole time I am moving, writhing, unable to keep still. I am out of it too, my mind floating, jaw wagging.

I also do this thing I call, “pretzeling.” My body sometimes bends up in all kinds of shapes. It often hurts when this happens, as my entire muscular system freezes up tight. They squeeze and squeeze and squeeze. Sometimes I can’t even breath. Last time it happened, my brother and sister had to pick me up. My posture didn’t change as they put me on the bed. Until it was over and my muscles relaxed. Then I began to shake and bend and move violently. Once my body was exhausted, I began speaking nonsense. This is where things get blurry to me. I said things I had no control over, but I don’t know what I said really. I know I was rude.

The worse part was that by the end, I was so physically weak I couldn’t roll my own body over. I had to have help. It was one of the most mortifying moments of my life, not just because I needed help but because I was starting to get used to it. I am in my 20s. I want to get married and have babies and find a great job. I don’t want to be unable to care for myself.

Well, after my neuro decided it wasn’t epilepsy, he seemed to forget I’d ever had seizures. He hasn’t asked about them in a long time. Then, he became focused on the migraines. The migraines are very bad in a lot of ways. When they were their worst, I’d be unable to spell, speak, and my body would start dancing to a writhing tune. I’d become unreasonable. As if I have lost all logical thought. I was always tired. I couldn’t button my own clothes. I was losing myself.

In February I was told I had Parkinson’s. I knew nothing about it. Through my own research and some conversations with different doctors, I had looked at MS, Huntington’s, and several other movement disorders. But not Parkinson’s. It hadn’t fit my experience with my little bit of research. Well, after that visit, I did three days of investigating. I looked at videos people posted of themselves. I looked at informational videos of talks by professionals. Articles were a great source, as were forums. I looked and dug and sought out all the relevant information I could find.

One symptom across the board is freezing gait. It was true I was freezing. My gait was a shuffle. It was hard to stand and then start walking, and this has been the case for some time. Though during everything, it became worse. I felt like I was being betrayed by my own body.

I added more pills to my collection. So many prescriptions had come and gone in the last two years, I had trouble keeping track of why some were stopped. (Trouble swallowing, tingling in arms and legs, etc.) And my neuro tried to use previously attempted medications after I stagnated on “improvement.”

I watched myself from afar, as the prescriptions worsened my brain fog. I held on tight and wanted everything to work. I tried to never miss a pill.

But then I had to travel, and I missed pills here and there until I stopped altogether. It was an accident, but by the time I realized what I’d done, I’d basically weaned myself off them. And within a few days, maybe a week, I felt better than I had in months. I was walking better most of the time, due to a lessoning of certain side effects. I was thinking more clearly. But I stopped sleeping at night. I hardly eat anything. My head hurts more often, more intensely, without the medication. But I can think. What is the better trade of? I haven’t figured it out yet.

At the end of the day, I am conflicted. Do I have Parkinson’s or not? All of my symptoms don’t match, exactly. But most do. I am not experiencing any noticeable ones right now, but perhaps I don’t notice what I experience? Perhaps I am so used to the subtle changes that it just seems normal. I don’t even know anymore.

The hardest thing about it all is I don’t know how to get a second opinion. I can’t pay for it. I can’t pay for my medication either, so I don’t plan on taking anymore. Not for a while. Still, I have to decide if I am going to go back to the neuro or not.

It’s been a year since I started my journey. Maybe a little more. And somehow, I don’t feel any closer to answers, though I have been given a diagnosis.