Good(?) old news!

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Mellismom

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Hi everyone

I am back. I know it's been a long time since I last wrote an update on my situation but nothing new had happened. Right until now.

I had another video EEG made and went back to get the result from my neurologist. The news is really old news but I didn't know! So here it comes: She told me that the EEG 8 years ago wasn't clear like my mom and I had thought (mainly because the doctors told us everything loooked fine?!) - it DID show something! Why on earth were the doctors hiding that fact from us?! Anyway, the new EEG did, too, and so did the one before.

My neurologist wasn't sure if I had epilepsy or not based on the EEG results because the changes in my brain are small and "normal" people could have that without having epilepsy. She wants me to go to a clinic where I can stay for a week. Judging from the symptoms she thinks it could be epilepsy or stressrelated seizures. I don't think the last one is possible, I've had seizures in times with no stressors at all. She did rule out narcolepsy though and never even mentioned PNES so I guess that's out of the picture now. It will be good to have all of this over with. The clinic she told me about is a really good place so I've heard from others with epilepsy.

Have a nice day :)
 
Mellismom

Its good to hear you are finally making progress and nearer a diagnosis. Best of luck from here on.
 
Seems like things are moving in the right direction. Have you been put on meds, or are they waiting for a clear diagnosis before deciding on treatment?
 
We talked about putting me on meds but I wanted to wait until I have been on that clinic. My parents know a little about it and say they are experts there so I want them to figure out what to do next. They are very thorough they say so that's good news.
 
Many times, EEGs don't capture any useful data. Sounds like yours did and it's helping lead to finding a diagnosis. Excellent!
 
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