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  #1  
Old 10-14-2010, 06:31 PM
TH Alvorsrod TH Alvorsrod is offline
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Default I may have been misdaignosed!!!! Good News!!!!

I was diagnosed with E in early 2008 when I had 2 GM seizures in my sleep. I have been on Keppra ever since. I HATE this stuff! It makes me a walking zombie and I still have seizures.

I decided to find a new doctor as I don't particularly like my Neuro and she's sooo far away. I found an Epileptologist within 8 miles of my home. Made an appointment see see him in November... at which time, we scheduled an EEG.

I have been so seizurish for the past 3 or so days and this morning, I was scared. I was so bad off this morning that I seriously considered going to the ER. I was hysterical. I phoned my brand new doctor's office (Epileptologist) to see if he was on staff at the hospital in case I ended up there. Although he is, I was informed that he had an opening TODAY at his office. I drove straight there! I had an EEG done, which came back perfectly normal. After a lengthly discussion with Dr. Farhadi, he suggested that I may have been misdiagnosed with Epilepsy and that my seizures may be non-epileptic seizures, which can be caused by many things, including anxiety and depression. He needs to study my case more to be sure but if he decides that I am not epileptic, I will no longer have a "Pre-Existing" condition and will be able to get health insurance!!!!!!!! If he is correct in his thinking, he said he can put me on Cymbalta for anxiety and possibly get me off this nasty Keppra!!!!!!! Please keep your fingers crossed!!!! I go back to see him in 3 weeks.
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Old 10-14-2010, 09:37 PM
LIZARD LIZARD is offline
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I really don't wanna burst your bubble, but I'm really shocked that an epi would hint that you don't have epi simply because of a single normal EEG. I have had both normal (including a 24-hour) and abnormal EEGs throughout my life. EEGs do not speak the gospel truth.

I truly, sincerely, hope you don't have epilepsy, but...you may have to live with the idea that you may be like me. I am VERY fortunate to have had only a handful of GM szs in my life...but it's still epilepsy.

and good luck!

LIZARD
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LIZ in Li'l Rhody; hydrocephalus dx'ed at 3 weeks old. No shunt surgery in 30 years! Epilepsy well-controlled and autoimmune issues being worked on. Mom to Caren, 19, successful ablation 4/18/07 for WPW; and Drewy, 16, (autism dx'ed at 2 1/2, 13 mm ACM dx'ed at 5 1/2, no surgery, doing awesome!!) Wife of 20 years to Don...and friend to Gina. RIP. 9/5/66-10/22/07

http://s.excoboard.com/Livingwithhyd..._Gina_Libonate
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  #3  
Old 10-14-2010, 09:44 PM
lor lor is offline
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Alvorsrod, That would be great if you have something that could be 'fixed'. I (& several here) can tell you we have had EEGs that turned out normal. For along time mine were normal so my dad thought I must not have epilepsy. Unless you have the seizure durring the EEG, it will turn out normal (how can it show that you sometimes have excess electrical impulses?). I'm not sure why they have EEG's to diagnose someone? Maybe it's a 'perhaps' sorta thing. But I'm no Dr. or expert. It took 26 yrs to find a med. that can help, I still have complex partials though.
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Old 10-14-2010, 09:46 PM
lor lor is offline
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(I see Lizard & I were writting at the same time & she kinda wrote the same thing. She got her post up before I did.)
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Old 10-14-2010, 10:16 PM
Porkette Porkette is offline
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Hi Alvorsrod,

I have to agree with Lizard and lor with this matter. There have been times when a persons e.e.g. will come back normal but the problem is the activity in the brain that's causing the sz. is very deep and the e.e.g. isn't picking up the area of the brain that's possibly causing a persons sz. You should have more detailed testing done to be sure like an MRI, CT scan,
as well as Pet scan and a spect scan. I hope your Epi is correct and that you aren't having sz. I remember taking keppra and I found out that it can cause a person to have sz. Here's wishing you the best of luck and May God Bless You!

Sue
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Old 10-14-2010, 11:05 PM
Tattoo2 Tattoo2 is offline
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I agree with the others here. There is wealth iof information here. My first EEG was also normal. That only means that no epileptogenic activity took place during the test. That is all. I was diagnosed by the occurrance or more than one unprovoked seizures. That gives the diagnosis. I also agree that I cannot believe any real Epileptologist would suggest that from the EEG alone. An epileptologist is usually at a Comprehensive Epilepsy Center and has always had additional training/education in epilepsy past the Nurology residency. There will be a certificate on the wall saying he/she has completed a Fellowship in Epilepsy or Neurophysiology. Without that, he is not an Epileptologist. What do you know abt this new doc? Find out where he did his Fellowship and in what area. Definitely necessary! Was Keppra your first med? Wonder why he chose that one? If that did not stop your seizures, maybe another will be better. You mentioned that you had Tonic Clonic seizures while asleep. Keppra is mainly for Partials. Have you ever experienced deja vu or strange usual feelings? Well glad you found us, but one negative EEG is not at all enough proof you do not have epilepsy. He was not at all thorough enough. I rather doubt he is a educated, certified Epileptologist. Doesn't sound like it. Tattoo

Last edited by Tattoo2; 10-15-2010 at 09:38 AM.
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Old 10-15-2010, 01:06 AM
annie annie is offline
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I would research his qualifications.

Absence of evidence is not evidence of absence. And when Carl Sagon wrote that he wasn't thinking about absence seizures.
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  #8  
Old 10-15-2010, 07:36 AM
jingle jingle is offline
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I think it's absolutely wonderful that you might get insurance now!! I sure hope so.
But I have to agree with the others ... I had clear EEGs for over 15 years.
I took a variety of Cymbalta-type meds plus many, many AEDs all those years and nothing helped. .... I continued having seizures.
And IMHO a seizure is a seizure whether it is called an epilepsy seizure or a non-epilepsy seizure.

One more comment (please forgive - I'm not trying to be mean) ... "I drove straight there! " You drove yourself to the new Epi? Driving with epilepsy is downright scary .... and it's possible your car insurance won't cover anything. Be careful.
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  #9  
Old 10-15-2010, 07:55 AM
TH Alvorsrod TH Alvorsrod is offline
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BLAH! I was just so excited yesterday that I had to share the news! Believe me, I do read each and every post from all of you and very much appreciate your input. I, too, am skeptical but have my fingers crossed!

I will follow the advice of all of you and check credentials, etc, etc. Thanks so much for your concern and input. I wish there was a "Hugs" smiley available here. Hugs to all of you!!!
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  #10  
Old 10-15-2010, 08:19 AM
TH Alvorsrod TH Alvorsrod is offline
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Quote:
Originally Posted by Tattoo2 View Post
Have you ever experienced deja vu or strange usual feelings?
YES! I experience those feelings when I'm having an episode! They're scary as hell!
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