AndrewIrish
Stalwart
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Hey all,
So Yesterday I got into to see a Neurologist for the first time in almost 5 years...
We went over all of my symptoms and he came to believe I actually don't have JME, and may not have Epilepsy at all....
He says it could be 'something else with jerks and seizures' - He said there wasn't enough testing done on me to begin with. He's ordering an EEG next month when I go back with insurance. He says I have a few options on that, I can do a '20 minute' EEG in the office, take some kind of machine home with me and return it every few days or do a hospital visit for a few days...
He's gonna order up a new MRI, as well.
I told him that I've had seizurs before when someone woke me up or surprised me and at first he said I could have an 'exaggerated startle response' - but then I told him that was only a few times and we decided that really didn't fit the bill. We went over how Valproaic Acid made me sick, Topamax and Dilantin didn'really help me... He mentioned starting me on Keppra but then said since I didn't have insurance, a good option would be the free meds 'Ophi'(Clobazam), since he had a 'free trial' coupon for it. He said give him a call Monday to see how I was reacting to it and decide to up the dosage or not....
I told him how I'd lost ability to move my hand and foot last week and he said that could tie in with the migraines I've been having.
I asked about Piracetam and he said I can't get it in the US - go to Canada or Europe, to treat my myoclonus. I mentioned Klonopin and he said he likes to shy away from Klonopin because it's a benzo that's very addictive and isn't good for 'long term' help. Then he said the Ophi is used to treat Lennox-Gustaut and control many TC's a day and he was using me as a kind of Guinea Pig, as he had never prescribed this off-label for my issues, to try and control severe myoclonic jerks... I'm only about 24 hours in on this and while I felt kinda sleepy as if I was 'in a well', on it so far, I'm more sedated then controlling the jerks... they're still happening, I just kinda feel zapped of energy... which isn't really bad... it's hleping with my anxiety I think too, a bit.
I can't wait to get an EEG done - I'd like to have some concrete evidence that I'm not insane and that I'm really having problems...
Just knowing me, I'll go do this EEG and it'll be those rare days where I'm feeling fine and nothing shows up on it.... I might just tell him 'screw it, throw me in the hospital and torture me until you see the seizures' just to get 'em documented.
He also did the laughable thing they all do, and said 'Don't drive.' That's great. I really feel lucky in Ohio they can't yank your license. I even told the BMV last year when I got it reupped, 'I had a seizure 3 weeks ago' - kabam, gave me my license with no restrictions. I say this 'cuz I've NEVER had a problem driving except for the issue last week with the hand. And while on a moral basis, I'd never drive but because I'm a breadwinner living in the middle of nowhere, I don't have an option or the luxury to juggle whether or ont to drive, it's something I have to do, much like drinking water. Now, when I don't HAVE to drive, I let the wife take the keys... it's just funny that doctors, even now, just say, 'Don't drive.' Even they must know there are pragmatic exceptions to that.
On a second note, I don't THINK Ohio can take your license... I told him my last TC was 2 months ago... I don't think Ohio mandates Doctor report to the BMV anyways...
Oh, also, this is good info for everyone else....
I talked to him about Magnesium supplements for epilepsy and/or Myoclonus - he said, for starters, you have to be on the supplements for a solid SIX MONTHS before they have an effect and that 99% of the time, it's useless anyways. He said the 'magnesium theory' is a load of hooey.
So Yesterday I got into to see a Neurologist for the first time in almost 5 years...
We went over all of my symptoms and he came to believe I actually don't have JME, and may not have Epilepsy at all....
He says it could be 'something else with jerks and seizures' - He said there wasn't enough testing done on me to begin with. He's ordering an EEG next month when I go back with insurance. He says I have a few options on that, I can do a '20 minute' EEG in the office, take some kind of machine home with me and return it every few days or do a hospital visit for a few days...
He's gonna order up a new MRI, as well.
I told him that I've had seizurs before when someone woke me up or surprised me and at first he said I could have an 'exaggerated startle response' - but then I told him that was only a few times and we decided that really didn't fit the bill. We went over how Valproaic Acid made me sick, Topamax and Dilantin didn'really help me... He mentioned starting me on Keppra but then said since I didn't have insurance, a good option would be the free meds 'Ophi'(Clobazam), since he had a 'free trial' coupon for it. He said give him a call Monday to see how I was reacting to it and decide to up the dosage or not....
I told him how I'd lost ability to move my hand and foot last week and he said that could tie in with the migraines I've been having.
I asked about Piracetam and he said I can't get it in the US - go to Canada or Europe, to treat my myoclonus. I mentioned Klonopin and he said he likes to shy away from Klonopin because it's a benzo that's very addictive and isn't good for 'long term' help. Then he said the Ophi is used to treat Lennox-Gustaut and control many TC's a day and he was using me as a kind of Guinea Pig, as he had never prescribed this off-label for my issues, to try and control severe myoclonic jerks... I'm only about 24 hours in on this and while I felt kinda sleepy as if I was 'in a well', on it so far, I'm more sedated then controlling the jerks... they're still happening, I just kinda feel zapped of energy... which isn't really bad... it's hleping with my anxiety I think too, a bit.
I can't wait to get an EEG done - I'd like to have some concrete evidence that I'm not insane and that I'm really having problems...
Just knowing me, I'll go do this EEG and it'll be those rare days where I'm feeling fine and nothing shows up on it.... I might just tell him 'screw it, throw me in the hospital and torture me until you see the seizures' just to get 'em documented.
He also did the laughable thing they all do, and said 'Don't drive.' That's great. I really feel lucky in Ohio they can't yank your license. I even told the BMV last year when I got it reupped, 'I had a seizure 3 weeks ago' - kabam, gave me my license with no restrictions. I say this 'cuz I've NEVER had a problem driving except for the issue last week with the hand. And while on a moral basis, I'd never drive but because I'm a breadwinner living in the middle of nowhere, I don't have an option or the luxury to juggle whether or ont to drive, it's something I have to do, much like drinking water. Now, when I don't HAVE to drive, I let the wife take the keys... it's just funny that doctors, even now, just say, 'Don't drive.' Even they must know there are pragmatic exceptions to that.
On a second note, I don't THINK Ohio can take your license... I told him my last TC was 2 months ago... I don't think Ohio mandates Doctor report to the BMV anyways...
Oh, also, this is good info for everyone else....
I talked to him about Magnesium supplements for epilepsy and/or Myoclonus - he said, for starters, you have to be on the supplements for a solid SIX MONTHS before they have an effect and that 99% of the time, it's useless anyways. He said the 'magnesium theory' is a load of hooey.
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