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Old 12-03-2013, 11:46 AM
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After 9 Years


My seizures started when I was 15 years old, since then, I've seen 4 different primary doctors, and 2 different neurologists, and yesterday, yesterday..
I was finally diagnosed.

After 9 years I was finally diagnosed with Juvenile Myoclonic Epilepsy.
After 9 years of ER visits, blood draws and MRI's, EEG's, random medicines, random doses of medicines and "we're not sure what's causing your seizures", I finally got a smart neurologist.

Yesterday I was crying because I was upset it took so long, today I'm crying because I'm so relieved that they finally gave me a diagnosis. And when I looked it up I wanted to scream because I have every single sign, every symptom. And the only neurologist told me this is what I have...

Thank you Dr. Mladinich.

Last edited by kristarenee; 12-03-2013 at 12:07 PM.
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Old 12-03-2013, 12:15 PM
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Yes, thank you Dr M.!

I'm sorry you've had such a frustrating 9 yrs and I'm glad you got answers and confirmation of what you've known for nearly a decade.
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Old 12-03-2013, 12:25 PM
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Thank you!! I appreciate it! It's relieving finally knowing what's going on.
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Old 12-03-2013, 01:46 PM
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Not knowing what is going on is the scariest. When my wife THOUGHT I started to have a t/c I was freaking the hell out and that was just an hour! Nine years of confusion had to have been so rough. I don't even want to imagine.

Well, glad you know now. Now you can move on and be healthy.
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Old 12-03-2013, 02:33 PM
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kristarenee, I certainly know how you feel, kinda. Until somewhat recently, I do not ever remember being told I have epilepsy, only that I have seizures. Looking over some older (10+ years) paperwork about six months ago I saw writings there where they mention epilepsy, but no one ever told me of it... just sent me in for surgery a few times. My current neurologist who I have been going to for about years recently mentioned I have epilepsy... I guess he just assumed I knew.

Regardless of my days in the past, thumbs up for you knowing with certainty just where you are at!
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Old 12-03-2013, 03:00 PM
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Congrats on getting an answer at long last! How did Dr. M arrive at the diagnosis? What tests did he do that the others did not?
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Old 12-03-2013, 03:12 PM
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I want to be happy for you, but.....


I'M JEALOUS!!!!!


That's good that you finally got some answers, but the fact that it took 9 years, I could imagine was probably stressful to say the least. I've only been dealing with epilepsy since March of this year and I'm 27 years old.

Of course my EEG, MRI, CAT, and overnight sleep study have all came back..."NEGATIVE"!!!

I have many deja vu thoughts/simple partials, so I believe I have temporal lobe epilepsy. But it's frustrating dealing with this and not knowing specifically what is wrong with me.

Because treatment is difficult w/o knowing what type of epilepsy I have.


Congratulations and good luck.

Last edited by Juju26; 12-03-2013 at 05:42 PM.
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Old 12-03-2013, 03:47 PM
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Kristarenee, I'm happy you finally have an answer after 9 long years!
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Old 12-03-2013, 06:34 PM
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Originally Posted by masterjen View Post:
Congrats on getting an answer at long last! How did Dr. M arrive at the diagnosis? What tests did he do that the others did not?
He did not do ANY tests others did not, he simply asked questions and I answered. and after looking over all my previous tests all he had to do was put together the puzzle pieces that others could not.
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Old 12-03-2013, 06:38 PM
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Originally Posted by Juju26 View Post:
I want to be happy for you, but.....


I'M JEALOUS!!!!!


That's good that you finally got some answers, but the fact that it took 9 years, I could imagine was probably stressful to say the least. I've only been dealing with epilepsy since March of this year and I'm 27 years old.

Of course my EEG, MRI, CAT, and overnight sleep study have all came back..."NEGATIVE"!!!

I have many deja vu thoughts/simple partials, so I believe I have temporal lobe epilepsy. But it's frustrating dealing with this and not knowing specifically what is wrong with me.

Because treatment is difficult w/o knowing what type of epilepsy I have.


Congratulations and good luck.
I can imagine what you are going through because I have been there and I am sorry!
It's the most frustrating thing to have a doctor come back and tell you there's nothing they see wrong and YOU KNOW there's something wrong.

Stay positive. I cried all day yesterday because I was angry that it took 9 years to figure out. But after talking to my daddy he did remind me that doctors are just humans and I can't be angry at them. ( it took them 10 years to find a brain tumor in my dad)

They will find what's wrong and find out what you will help you treat it. If they can do it for me, they can do it for you!
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Old 12-03-2013, 06:42 PM
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I thought waiting 3 1/2 years was a long time but that was nothing compared to what you and others have been through.
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Old 12-03-2013, 06:56 PM
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Originally Posted by MAB View Post:
I thought waiting 3 1/2 years was a long time but that was nothing compared to what you and others have been through.
MAB, it was long wait. but 3 1/2 years is still way too long for you too!
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Old 12-04-2013, 02:24 AM
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Kristarenee,
Glad to hear that you found a neurologist who listened to you & you finally got a diagnosis.
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Old 12-04-2013, 04:18 PM
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Congratations on getting a diagnosis and a good neurologist.

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Old 12-04-2013, 07:53 PM
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(((hugs))) krista... that's hell. but GREAT that it was finally recognized, what a difference it makes.
we're twins on this... i had epilepsy for 9 years without knowing too. and my first seizure was at age 15 too. i was misdiagnosed by a psychiatrist at 15 as having post-traumatic stress disorder (had simple partials and many times e and ptsd are mistaken for the other).
found out 10 yrs after grand mals that they were partials all along, never ptsd, from a lesion (finally found) that was developed pre-birth. before my brain surg my doc requested the psych see me to go over the misdiagnosis and he refused .

so girl...9 years not knowing since age 15... i feel ya. more (((hugs))).
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Old 12-04-2013, 08:10 PM
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Sucks all neurologists aren't smart. The 5 or 6 I've had, only two knew there a$% from their elbow! Good to hear you finally found one, hope things start getting better for you!
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Old 12-05-2013, 01:22 PM
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Originally Posted by qtowngirl View Post:
(((hugs))) krista... that's hell. but GREAT that it was finally recognized, what a difference it makes.
we're twins on this... i had epilepsy for 9 years without knowing too. and my first seizure was at age 15 too. i was misdiagnosed by a psychiatrist at 15 as having post-traumatic stress disorder (had simple partials and many times e and ptsd are mistaken for the other).
found out 10 yrs after grand mals that they were partials all along, never ptsd, from a lesion (finally found) that was developed pre-birth. before my brain surg my doc requested the psych see me to go over the misdiagnosis and he refused .

so girl...9 years not knowing since age 15... i feel ya. more (((hugs))).
Oh my gosh!!! Sometimes I wonder how they miss these things. I'm sorry they took so long for you as well!! ((Hugs))
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Old 12-05-2013, 01:24 PM
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Now that I am finally on a higher dose of medicine and they switched medicines, things have gotten so much better. What a difference a diagnosis can make right?
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Old 12-05-2013, 01:29 PM
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oh my........ yes

at 15 he put me on zoloft, and tho it helped somewhat the 'episodes' as we called them didn't go away; i'd had enough after 6 years of being on it (was never a drugs-in-your-system fan - when diagnosed with e and a prescription in hand i was stunned), so dropped the zoloft and nothing changed, still had the episodes.
when grand mals started at 25 and found out i had e i went on carbamazepine and in the last 10 years added topamax, lamotrigine and vimpat . what med are you/were you on?
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Last edited by qtowngirl; 12-05-2013 at 01:35 PM.
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Old 12-05-2013, 09:58 PM
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Originally Posted by qtowngirl View Post:
oh my........ yes

at 15 he put me on zoloft, and tho it helped somewhat the 'episodes' as we called them didn't go away; i'd had enough after 6 years of being on it (was never a drugs-in-your-system fan - when diagnosed with e and a prescription in hand i was stunned), so dropped the zoloft and nothing changed, still had the episodes.
when grand mals started at 25 and found out i had e i went on carbamazepine and in the last 10 years added topamax, lamotrigine and vimpat . what med are you/were you on?
Oh my goodness!!!


For the past 9 years I have been on various doses of topamax. Anywhere between 100mg to 150mg, very low, so it wasn't doing much.

They just switched me to 1000mg of keppra. �� so far, much better.
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