Discussions By Condition: Nerve conditions

Recent changes in medicine have yielded better results

Posted In: Nerve conditions 5 Replies
  • Posted By: jordosaxman
  • February 24, 2009
  • 00:26 AM

This is my first post, so welcome wrongdiagnosis!

This post contains spoilers for House Season One, Episode One, so if you haven't seen it...I need to quote from it to explain why I did what I did so if you haven't seen it, I apologize.

I have had seizures for 7 years now. They began when I was 16, so it was diagnosed as "juvenile-onset epilepsy". Nothing has treated the seizures to the extent that they stop. I generally go 6 months and then have another seizure. I've tried Neurontin, Keppra, Lamictal (the one I was on until about a month ago) and many others. My first seizure happened while on the road with my dad who is a truck driver. I've been all over the eastern US including Texas (right by the border) and as far north east as (rural) New York.

While watching the first episode of Season 1 of "House M.D." I saw a woman who had similar problems talking that I do right before a seizure, and so I took an interest in it. Turns out that she had neurocysticercosis, an infestation of the brain with a tape worm known as Taenia Solium, or the "pork tape worm". I had spent a lot of time in Texas during the months before and I was desperate for an answer to my problem. I do tend to eat all of my meat medium well, and the symptoms fit. I tend to get eye infections in my right eye, and many other symptoms associated with neurocysticercosis fit my current problems. I've been to at least 4 neurologists and none of them has been able to find a medicine that will fix the problem.

The treatment for neurocysticercosis is Albendazole and/or praziquantel along with an anti-inflammatory such as prednisone to prevent swelling when the cyst breaks down and the worm dies. I ordered the meds as needed, researched the dosages for (months!) and then decided to treat.

I don't mean to be rude, but I didn't come here to be scolded. If you have intentions of fussing at me for ordering meds when a doctor refused to prescribe them to me, despite my reasoning, you have no business on a forum that was recommended to me by people as a place that helps people. Where I got the meds isn't any of your concern. If you would like to know how much I took, feel free to ask if you feel it's relevant. I treated myself according to themayoclinic.org's treatment regiment for neurocysticercosis.

3 weeks have passed now. I'm off of my seizure medicines, am having no gran-mal seizures and no more swelling.

So HERE are the symptoms:

* I only have peti-mal seizures when I get less than 9 hours of sleep. I usually end up falling/tripping.
* mild confusion at times when trying to read.

As long as I get at least 9-10 hours of sleep I'm fine. If not, the peti-mals start.

I appreciate everyone reading this and am anxious to hear your comments, as long as they aren't condescending concerning where I got my meds. They came from a very reliable source, were sealed, were taken correctly and will be tapered correctly.

Thanks and God bless.

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