Neurology Problems Tied Up In A Nice, Neat Little Package; Awaiting Pretty Bow.
Friday October 11th 2013, 6:45 am
Filed under: Health (Not Cancer), Leukemia

I saw a neurologist at the end of last week who explained my summer of symptoms (and then some), why they’d occur together, and most likely why I’m having them. What he explained really tied up several different things I’ve been dealing with and hearing from doctors into one nice, neat little package. A nice, neat little package that, at this point, requires just one little thing before a beautiful bow is placed atop it: a scientific test.

In addition to the hallucinations I’ve been experiencing over the summer, I’ve also been experiencing vertigo (thanks for the keen observation, loyal reiders!), and the tremors that I’ve had for many years have become much, much more pronounced. These three things together have caused fairly constant exhaustion. Together, they can make it extremely difficult for me to carry out gross motor functions without fear of falling over, things such as walking around big areas and going up and down stairs. They’ve also caused me trouble with fine motor skills, like holding a glass of water without dropping it and typing without it coming out as gobbledygook.

Just to be clear, I don’t want to give the impression that I’m totally unable to get around or unable to take care of myself, because that’s not the case. It’s just that these things are causing me great fatigue because I have to focus a lot to make sure I’m not falling or dropping something or typing ds/fisd09;. When walking much, it’d been important that I have someone around to make sure I’m not falling. My feet and knees sometimes shake and do not move forward in the manner I’m used to. And there’s that thing where it feels like the room’s gravity is constantly shifting between different walls. That one’s vertigo, which I had always incorrectly associated with fear of heights due to the classic Hitchcock film The Birds. And there are the hallucinations, which won’t leave me alone despite how many times I hit “unsubscribe,” so I’m not going to give them the attention they want by writing any more about them.

It’s likely that these three conditions are a result of the two specific parts of the treatment of my leukemia: first, the cranial radiation, in which beams of radiation were shot into my head. Side note: I find it interesting just how many ordinary people in comic books from the 1960s were turned into superheroes after being hit with beams of radiation. I mean, this was during the Cold War, when ducking and covering under school desks was practiced regularly for fear of radioactive Soviet bombs being lobbed at the United States.

Anyway, the other component to my body’s current nervous reaction is most likely the chemotherapy I was given for a long period of time through my brain into my cerebrospinal fluid (which surrounds the brain and spinal cord).

It turns out that a combination like this chemotherapy cocktail can cause nervous system damage that takes years after treatment to result in a group of certain neurological problems that reveal themselves around the same time. Neurological problems like the ones I’ve been experiencing! For some survivors, these problems might not emerge for 35 years, while for others (me), it may only take three years. Of course, a lot survivors will never experience these problems at all. Lucky ducks.

The reason these symptoms usually present around the same time is that that they’re all caused by teeny-tiny cute little seizures in the brain. These seizures are generally too small to see, as opposed to the kind of seizures that shake people’s entire bodies. Despite their smallness, these seizures can still cause all the previously listed and complained about nervous system problems.

I am currently on my way to get an EEG (Electrosomethingorother) test (you have to click that link–seriously, you have to see how many doohickeys will be attached to my head)(it’s A LOT of doohickeys), which was scheduled early in the morning so as to catch me feeling disoriented and not in an altogether rested state. Fools! They could have selected any time of day and caught me disoriented and in a not fully rested state!

Anyway, the EEG detects tiny seizures. Although, if it doesn’t detect any seizures, that doesn’t mean I’m not having any seizures–it could simply mean that I did not have a seizure during the test. If that is the case, I’d most likely have to go into the hospital for a couple of days of a long EEG, where they wait longer for seizure activity. At any rate, confirmation of seizure activity will be the pretty bow on this package. It’s weird to hope for seizures, but I guess what I’m really wishing for is an answer and something that’s treatable. Which, in this case, happens to be small seizures.

Okay, that’s it! They’re calling me back for my EEG!


Several hours later: Uh… whoops. I did not hit the “publish” button after I finished writing this post. I was feeling sort of disoriented and not in an altogether rested state. The EEG went just fine. I thought it was very interesting and I’m looking forward to hearing the results!

For a picture of me with all those doohickeys all over my head, check out this selfie!

EEG Doohickeys

That’s it for now!
(for real this time)


2 Comments so far
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You are my superhero! By the way, how did you get your avatar to be in the wicki on the walk cycle?!

Comment by Dad 10.11.13 @ 9:58 pm

It’s amazing but not at all surprising to me that despite everything you’re having to deal with right’re writing so well and with such a great sense of humor. Hopefully the EEG will be conclusive and deliver the treatable diagnosis that, because it’s treatable we’re all hoping for. Express delivery on that would be even better. Whatever it is, you’ll get through it while being awesome the entire time. That seems to be how you operate; well done!

Comment by Krista 10.12.13 @ 5:28 am

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