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Q: Misdiagnosed
asked by: PlainJane on April 18th, 2005
New User
I am from a small town that only has one hospital. It has always been rumored to be a bad place to go and if possible to drive the 30 minutes to orlando but after I had my first seizure I was of course taken to the closest place. I was in the hospital for a week and had the eeg, cat scan, mri and everything else done and they all came back fine. The on call nuerologist suggested I start medication because of the severity of the first seizure and I took his word.
For the last 2 years I have been taking 600mg of dilantin and 400mg of topamax. I was never given a cause for my epilepsy though doing some reading I found that was common. My side effects are high and college hard, to say the least. My memory is shot, i'm always tired, often irritable and I find it harder to concentrate and understand.
I went this past weekend to a new neurologist out of town after waiting 6 months to get in for an appoitment. He asked me questions, did a few tests and looked at the films I brought from the hospital from 2 years ago. He explained that I had mesial temporal sclerosis, which is not uncommon. However his explination made the last 2 years make perfect sense. Everything seems to fit so well now and it frustrates me to think i've spent so long not understanding when the answer was so clear.
Apparently the hospital in my town does not have anyone trained to read brain scans in the radiology department. The same person reads a scan of a foot, arm, and a brain. I wonder if this is common.
Sorry for the rant. I really dont know anyone else with epilepsy and I always feel that no matter how hard I try to explain myself or my feelings its doubtful anyone really understands me.
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kayakmom
replied on April 19th, 2005
Experienced User
I am so sorry you went 2 years without proper treatment. I know that is so hard.

It is worth waiting for a good doctor to see results!
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Dakotalawdog
replied on April 21st, 2005
New User
That sounds familiar. I've been thru over 2 1/2 years without someone figuring out what is going on with me. I hope i'll find out soon myself.

Good luck!
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