Had my first appointment with an epileptologist and...

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Hi, this is my first time posting here, but I've been watching the forum for a while. :)

So after a year and a half of seeing my neuropsych, we went for a second opinion with an epileptologist. It went pretty well, and she's decided on bloodwork, an MRI, and also a prolonged video EEG (as long as all the insurance goes through).

However, the one thing I found worrying is this: I was diagnosed with Temporal Lobe Epilepsy 2.5 years ago, at 14, although I've been having absences and the very occasional tonic clonic and drop seizure all my life. She said she's not going to diagnose it as epilepsy yet, and instead put on the video EEG referral form "paroxymal spells + other seizures". Has anyone had experience with this? Is this kind of a 'limbo' diagnosis - as in, she doesn't know completely yet, but still think it is epilepsy? I have some psychiatric history, although that has all been attributed to the Temporal Lobe Epilepsy. I just don't want to be in the epilepsy monitoring unit for 5 days only to be given a psychiatric referral or something?

Any help would be appreciated - everyone on this forum seems so knowledgeable and nice! :)
Hi Inarnia --

Some neurologists aren't comfortable making an epilepsy diagnosis based solely on clinical events, and they like to have a positive EEG to clinch things. It sounds like your neuro may be in that category. It's possible that she's somewhat biased by your psychiatric history even though your symptoms have been attributed to seizures. She may also want to be as certain as possible before recommending anti-seizure medication.

That said, you should feel comfortable asking her beforehand what she's looking for, and if she will diagnose epilepsy even without a positive EEG. She should know that an EEG should never be the sole determinate for a diagnosis of epilepsy -- it is an adjunctive test to support a clinical history that is consistent with epileptic seizures. If someone has a history of seizure symptoms, a negative EEG should not discourage a neuro from treating a patient for those seizures.
Nakamova is right "an EEG should never be the sole determinate for a diagnosis of epilepsy" my EEG's were all negative except for the last where five sz (all at the hospital)were registered one but that was not the sole determinant for the diagnosis. Try to find a competent epileptologist. The tests you’re talking about are the usual tests that a neurologist will run. You will find some that are very good and others that are just in it for the $$.
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