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Does anyone have JME? I have a question.
Sun, 07/20/2008 - 15:38I've had Epilepsy for pretty much five years now and I've grown more photosensitive and have recently been diagnosed with JME (Juvenile Myoclonic Epliepsy) but I don't have the jerks. I have everything else on the symptoms list but the jerks.
Does anyone else have JME and no jerks? I really don't want a misdiagnosis. I'm going to talk to my neurologist about it but I'm not going to see him for a while and the question is really bugging me.
Help?
Comments
Re: Does anyone have JME? I have a question.
Submitted by jmartin1986 on Mon, 2013-08-26 - 17:53
Hello,
I also have JME. I started with absence seizures since the age of 2, but was told I would grow out of it. I don't know why the doctors never thought about my family history of strong epilepsy...I was ok until about the age of 21/22ish...I started getting the jerks really bad. My arms would fly out, I would gasp really loud, my eyes would roll back, and I would get this "shock" feeling in my head. I would be confused for a minute as to what I was talking about and when reminded I couldn't remember why I was talking about it. Then I started having grand mals in my sleep. That's when I was diagnosed with JME at age 23. I have been on Keppra, Depakote, Lamictal, Topomax, and now starting today, Vimpat. I don't know how i'll respond to this new med, because it seems the side effects are always so bad for me I cant tolerate the medicine, but we'll see. I still have small jerks here and there, but no where near what they were before being diagnosed. Mostly they happen when trying to fall asleep, or when im really tired. And they aren't nearly as bad. I'm also super light sensitive too. So, I would think it could be possible to have JME and not have a lot of jerks. Although I would think you would of at least gotten them at some point in time, to some degree, weither they are bad or minor. I don't know, that's just my thought on it, but im not the doctor. If your wondering about if your misdiagnosed, I would try seeing another neuro to get a second opinion and tell him your thoughts/concerns. I am now on my 4th neuro, only saw him once this past Friday for the first time, but he seems very educated and nice, caring and listens to my questions/concerns. It definitely helps to have a doctor your comfortable with and can talk to without feeling like your being ignored. Do what feels best for you. I wish you good luck in all of this! :)
Hello,
I also have JME. I started with absence seizures since the age of 2, but was told I would grow out of it. I don't know why the doctors never thought about my family history of strong epilepsy...I was ok until about the age of 21/22ish...I started getting the jerks really bad. My arms would fly out, I would gasp really loud, my eyes would roll back, and I would get this "shock" feeling in my head. I would be confused for a minute as to what I was talking about and when reminded I couldn't remember why I was talking about it. Then I started having grand mals in my sleep. That's when I was diagnosed with JME at age 23. I have been on Keppra, Depakote, Lamictal, Topomax, and now starting today, Vimpat. I don't know how i'll respond to this new med, because it seems the side effects are always so bad for me I cant tolerate the medicine, but we'll see. I still have small jerks here and there, but no where near what they were before being diagnosed. Mostly they happen when trying to fall asleep, or when im really tired. And they aren't nearly as bad. I'm also super light sensitive too. So, I would think it could be possible to have JME and not have a lot of jerks. Although I would think you would of at least gotten them at some point in time, to some degree, weither they are bad or minor. I don't know, that's just my thought on it, but im not the doctor. If your wondering about if your misdiagnosed, I would try seeing another neuro to get a second opinion and tell him your thoughts/concerns. I am now on my 4th neuro, only saw him once this past Friday for the first time, but he seems very educated and nice, caring and listens to my questions/concerns. It definitely helps to have a doctor your comfortable with and can talk to without feeling like your being ignored. Do what feels best for you. I wish you good luck in all of this! :)
Re: Does anyone have JME? I have a question.
Submitted by idkwhat2do on Tue, 2013-09-10 - 02:22
Hey Awtum, I realize I'm a little late to the party, but who knows who I can help...
I'm 19 years old and I've been diagnosed with JME since 2008. I had bad jerks and the occaisional seizure with sleep deprivation.
I was prescribed 1000mg of Keppra XR, and suddenly everything's gone. I can drive, I can breathe, I can live my life. No photosensitivity, no nothing. Just gotta watch my sleep and take my meds. I only have about one seizure a year if I'm unlucky. So I consider myself extremely lucky.
In your case, either you have VERY low-key JME, or it is a misdiagnosis. If it weren't for the jerks, they would not have diagnosed me.
I would like to know where you are now. :)
Good luck.
<3
-Austin
Hey Awtum, I realize I'm a little late to the party, but who knows who I can help...
I'm 19 years old and I've been diagnosed with JME since 2008. I had bad jerks and the occaisional seizure with sleep deprivation.
I was prescribed 1000mg of Keppra XR, and suddenly everything's gone. I can drive, I can breathe, I can live my life. No photosensitivity, no nothing. Just gotta watch my sleep and take my meds. I only have about one seizure a year if I'm unlucky. So I consider myself extremely lucky.
In your case, either you have VERY low-key JME, or it is a misdiagnosis. If it weren't for the jerks, they would not have diagnosed me.
I would like to know where you are now. :)
Good luck.
<3
-Austin
Re: Does anyone have JME? I have a question.
Submitted by carends on Thu, 2009-11-19 - 21:56
I was diagnosed with JME 2 years ago, but had my first grand mal seizure 9 years ago. I very rarely have any jerks, so yes it is possible. My JME was not diagnosed properly until I saw an epileptologist, and had a couple overnight EEG tests. This might be a suggestion for your doctor.
I have been prescribed Depakote, Keppra, Topomax, plus others over the years, with Topomax working the best for me.
I was diagnosed with JME 2 years ago, but had my first grand mal seizure 9 years ago. I very rarely have any jerks, so yes it is possible. My JME was not diagnosed properly until I saw an epileptologist, and had a couple overnight EEG tests. This might be a suggestion for your doctor.
I have been prescribed Depakote, Keppra, Topomax, plus others over the years, with Topomax working the best for me.