There is a part of my life that I have not written about in this blog. It's nothing dark or scary or deathly serious, but it is something that has been a part of who I am for the past year. I've refrained from mentioning it thus far, not being sure if I wanted to expose something that is so personal on the Internet. After some thought, and stemming from my previous post, I've decided to talk about it.
Since June 2007, I have been suffering from a neurological disease that causes involuntary leg and arm movements. These movements happen mostly while I am sleeping, thus greatly reducing the quality of sleep. I do have the movements during the day, but they are much less severe. It can be described as a violent stiffening of the muscles, resulting in a kicking or punching motion. To clarify, it is not restless leg syndrome. Since the onset of these symptoms, I've also been experiencing short term memory loss, slurred speech, and some loss of motor skills.
After a few months of having these symptoms, I saw a neurologist that specializes in movement disorders. He ordered a number of different tests to see what is going on behind the scenes. I've had a sleep-deprived EEG, an MRI, blood work, and a 72-hour ambulatory EEG. The only thing that they have found thus far was from the results of the MRI. They found what is called Grey Matter Heterotopia.
Simply put, I have a small, extra piece of grey matter (the part of the brain that processes information) located in a place where only white matter (the part of the brain that relays information) should be. My neurologist speculates that this "extra brain" is causing certain nerve signals to misfire, causing the movements and the other symptoms. There is no known cause for this, and as of right now, there is no cure. I have an appointment in July with my neurologist to talk about what the next step will be. The condition I have is rare enough where much of the treatment options are trial and error. There are plenty of medications that I can try to control the symptoms, but until I reach a diagnosis its recommended not to be medicated.
So, here I am almost one year later, still seeking an answer. What I have is not life-threatening, and I'm very grateful that I'm not stricken with anything worse. But, as you can tell by my post yesterday, my constant lack of good sleep is really beginning to take its toll and it is getting harder and harder to function normally. I'm tired of having to look at my work schedule three times an hour because I forgot what time I begin or end my shift. I'm tired of dropping things on the floor or having difficulty with tying my shoes because my fingers won't cooperate. I'm tired of having to repeat myself because my speech slurs uncontrollably at times. I'm tired of waking up so completely exhausted that I struggle for motivation to complete the most basic of daily tasks.
While there are many reasons I chose to write about this, the primary reason is that it feels good to talk about it. It is therapeutic for me type this all out, because it reassures me that I'm not making all of this up. Part of me is a little scared as to what the future holds, because all of my symptoms have worsened since they began, and they seem to be getting worse still. The other parts of me are intrigued to find out what is in store for me, because its entirely possible that my testing and treatment experience is paving the way for others who have what I have.
Either way, I'll take everything as it comes... One day at a time.