The NewBec

I'm not who I was.

Narcolepsy or Not?

Last month, God miraculously provided an “in” for me with a reputable neurologist and a sleep doctor, both of whom I like very much. They work closely with each-other, which is a plus. First on our agenda of weeding through my neurological problems is to determine whether on not narcolepsy is an accurate assessment. (If you are new here and you are lost, the long-story-short is this: last year, although my sleep study came up negative, my sleep doc at the time still believed me to have narcolepsy due to other symptoms and my neurologist at the time chalked all my symptoms up to “falling under the narcoleptic umbrella”. After negative responses to meds, I was also told there was nothing else that could be done by them to help me.)

So far, I’m still kind of on the fence about what to believe. I’m just kind of along for the ride in hopes that more information will eventually provide accurate answers… and hopefully solutions. My new sleep doc, because of the former sleep study, does not seem to be convinced that I likely actually have narcolepsy. However she does believe me to have a “complicated” sleep disorder, and some of those symptoms overlap. On the other hand, a blood test that she ordered did show that I do have the genetic predisposition that makes me susceptible to narcolepsy. (This isn’t a conclusive test, it just provides more information. A person can have this gene and still not have narcolepsy).  There are other more complicated things we can do to gather more information, but I’m not yet sure if we will go those routes yet. In the mean-time, my neurologist is having me try another medication for a month. Although not as terrible as other drugs that I have tried, I’m not a fan. I’ve been on it for 2 weeks so far and haven’t experienced any help from it. So we shall see.

That is my very boring health update. Sometimes I have good days where I am given grace to function pretty well off of 3 hours of broken sleep and still be productive, and I have really bad days where practically all I can to is lie in bed. Of course there are a whole lot of in-the-middle days. So far it still seems as though I still have a long road ahead of me, but I am encouraged that if there is hope to be had, I’m now seeing the best people who will steer me in the right direction. I’m ever so grateful for the people and prayers that God has used to get me this far.

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This entry was posted on April 23, 2013 by in Uncategorized and tagged , .
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