Newbie - again. I thought I was the only one hard to diagnose.

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Sandylu

Sandylu

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Wow! I'm finding it interesting how many are having a hard time getting a diagnosis - like me. I've been struggling with some sort of seizure disorder since 2010, most likely due to scar tissue from an old stroke. I signed up with this forum about a year ago, but was so frustrated by what my then doctor was telling me that I was starting to think I was nuts. I never really used this forum because I thought it was only me that had that problem. It sounds like some of you have been through that. After a couple of TIAs about three weeks ago, I realized my doctor wasn't doing anything for me. I started with a new Neuro, and I'm getting my first (yuck! sleep deprived) eeg with him in just three hours. I've heard different things about the results of my testing in the past, and hoping I get some real answers this time. Wish me luck.
 
Good luck! (Not to rain on your parade, but after 30+ years of an epilepsy diagnosis, and possibly 15 or 20 years of undiagnosed/unwitnessed seizure activity before that, my epilepsy is still "idiopathic". I hope they find a cause. Even if it doesn't change anything, it's nice to know. (reminds me of Fiddler On The Roof)
 
Good luck SandyLu! Unfortunately some kinds of epilepsy can be hard to diagnose, and some kinds of neurologists aren't great at diagnosing. I hope you get some answers soon.

Best,
Nakamova
 
Hi Sandy,

Nak is right. Even with sleep deprivation its a pain in the butt. They cant see everything everytime. You may need to wear the ever so fun (Im sure you all agree) head sensors for a few days so they can try to isolate where the seizures are coming from. The sleep test seems to be hit or miss. Good luck and all the best. Keep us posted. -Jeff
 
Thank you ALL! My brain has been "fried" (he he) because I had a sister have some major surgery then my dad had a major stroke himself this week. I sure hope my test results show SOMETHING, not because I want to be ill, I just want answers. it is a hard road, isn't it? I will let you know when I know anything. Thanks for letting me know your situations, it helps me know in not alone.
 
back to the start. the new EEG showed nothing. I was afraid of this, but I can't be any worse off than I was before. is it weird to hope something shows up? I also have to "break in" the new doctor now, too. As long as he takes me serious, though, I will take him serious.
 
Hey thats bad news :(, no it itsnt wierd, look around most people want that just for answers im wanting it too when i have mine!, good luck in your journey
 
thank you Maisy. I'm starting to wonder if I'm just going nuts sometimes. I appreciate all the feedback. it really, really, really, really helps to know that I'm not alone.
Hugs,
Sandy
 
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