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I know this all to well also. Occb, you know this about me too. BIG HUGS TO SCOTT AND YOU!!! I am sorry I am joining in so late on this. This angers me to no end!!!!!!!!!!!!!! If this is FLE then normal results would be a typical result on the EEG. He needs a longer EEG and the E society needs to help you guys push for this with his new doc. Sounds like Scott needs a new team of docs. I had to do this several times myself. Keep at it tiger and the both of you will get results with doctors and with tests.

tam bam
 
Digital EEG Printout...

Nakamova said:
After my EEG, I asked my neurologist for the printout (I wanted to do something graphic-design related with it), and she said that they don't print it out, it's all digital now. So I never got to see my brainwaves spiking and doming...
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I rec'd a copy of my digital EEG and printed my results from it on my home computer...ask for a copy of yours to keep in your home files....
 
Maybe it was the policy at the hospital where the EEG was done. At any rate, it was ten years ago, so I've let it go. For any future EEGs, I'll be more aggressive about asking fro my copy.
 
So sorry! Been there done that! You're doing all the right things so now its a matter of not giving up and not letting them bully you guys into anything you don't want or believe. Good Luck
 
Hear me ROOOOOOOOOAAAAAAAAAARRRRRRRRRRRRR!:lol: We're definitely not going to just accept this. We'll find a way to get him help.
 
What did you say?? My computer didn't allow that sound to come through!! :roflmao:
 
Yup. couldnt hear that too well. i think you need that a bit louder.
 
We're meeting with the E Association support person next week, yaaay! She's giving us information about how to talk to doctors to get their attention, further info on keeping a seizure diary (which I have already begun anyhoo, because I'm fed up with all this shizzle), where to request the doct to send us, and information to back up what we're saying. So, you know, what I've been doing, but clearer and more organized and hopefully more impactful.
 
Yay! Good news. I hope that the info that she gives you gets those docs to pay attention! :)
 
Yaaayyyy! Right now I'm re-typing his entire history of experiences, because my last copy got wiped out on the computer, and he's a sloooooow typer. It's long and involved and giving me a headache. Poopy! What we won't do for those we love, eh? If it helps, it's all worth it.
 
occb said:
Yaaayyyy! Right now I'm re-typing his entire history of experiences, because my last copy got wiped out on the computer, and he's a sloooooow typer. It's long and involved and giving me a headache. Poopy! What we won't do for those we love, eh? If it helps, it's all worth it.
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Hehe. I keep mine backed up on an external, my laptop, and a thumb drive. But I am a little obsessive about backing up important data. Just a little. teehee.
 
I need to adopt your obsessiveness. I'll be making hard copies on a nightly basis and make it into a booklet for the docs, and for us to keep. Plus I'll keep a copy on a usb flash drive to be kept in his med drawer. I no longert rust my buggy computer.
 
Ever since I had a hard drive crash I use an automatic back-up system (Retrospect software) onto two LaCie hard drives.
 
occb said:
I need to adopt your obsessiveness. I'll be making hard copies on a nightly basis and make it into a booklet for the docs, and for us to keep. Plus I'll keep a copy on a usb flash drive to be kept in his med drawer. I no longert rust my buggy computer.
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*snicker*

If only I were a little more obsessive, I wouldn't be spending several hours a day right now re-organizing (and backing up on two external drives - my house looks like the back storage room of a computer hardware store right now, lol) about 70 GB of digital art data that winblows was so kind as to wipe out for me last week. *sigh* I need to get a Mac and move my digital art and video editing and their respective backups over to it, I think! :roflmao:
 
Ellie, (occb) if you can keep the descriptions of conversations in a point form, short, precise & concise manner, this should help with the reconstruction of your journal. The exception to the rule would be for the actual seizure descriptions, the movements, duration, palor, and other relative medical terminology. (I can give you a description via PM, since I don't want to "gross out" anyone on the site. I was in Nursing School for a while, so I know some of the jargon.)

When you start talking in the professional's language, they're going to wonder how you'd know this and begin to take a bit more notice. It will show that you know what you're talking about!
 
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