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Not sure what my diagnosis could be anymore...
Mon, 11/19/2007 - 18:58Hi,
I'm a 27 year old female...I was originally diagnosed with Juvenile Myoclonic Epilepsy when I was 19 years old, after having my first Tonic-Clonic seizure at age 18, reviewing some medical history that kind of pointed to a diagnosis of epilepsy, and finding abnormal brain activity in an EEG. I have been followed by a neurologist ever since, and on one of my last EEG's (not since 2003) it was stated as a "conclusion statement" that the EEG was indicative of generalized idiopathic epilepsy. I have had a few more Tonic-Clonic seizures since my first one, but they have been quite well controlled actually by medication and lifestyle changes, so haven't had one since probably 2002/2003. What has developed a lot of now...and in increasing severity over the years, is what by all means *appears* to feel/seem like, by reading descriptions of it, auras/simple-partial seizures and complex-partial seizures. I've also more recently in the past two years or so started having "cluster seizures" in which I will stay conscious, but my body will jerk/convulse non-stop for many minutes at a time, over and over again, sometimes from my head, arms, legs, but mostly resonating from my stomach. I have so many odd head "feelings"...I just don't know what to make of it all anymore. Even odd body feelings too that make my body feel like it's going to explode of electrical activity/charges sometimes. My neurologist knows all of this...I am taking Epival, Topamax, Clonazepam at night and as needed for the cluster seizures, as well as Ativan, and then I also take Acetozalimide to decrease bloating in my body/brain around the time of my menstrual cycle, which makes me more susceptible to seizure activity. I also have so many "triggers" too.
What I am just wondering is....is it even possible to still have that initial diagnosis of JME?!?!??! From all I have read...none of the "newer" things I have been experiencing in the past few years go with JME. It seems like my brain has transformed or developed a new type of epilepsy, and I don't know if any of it makes sense or even sounds like it's real and not crazy. My neurologist has NEVER questioned me on ANY of this...but he is sending me to an Epilepsy Clinic to see an Epilepsy Specialist too.
I just don't know if any of this can even be possible, having all these symptoms together? Is there anyone else who has something even remotely similar?!?
Kris
yes it is possible
Submitted by ebaum on Mon, 2007-12-24 - 10:52
I have had epilepsy since I was 10 years old. The whole time I was given the wrong diagnosis of Temporal Lobe epilepsy. I recently had a VEEG and it made it very clear that I have had JME this whole time. The reason it is confusing is because it is very possible and likely to have Tonic/Clonic and partial seizures with JME. So it sounds possible to me. I have had all 3 kinds. And I have had EEG spikes in various areas of my brain. Have you tried Depakote? That is the best drug for this seizure disorder. I tried it but the weight gain, hair loss and everything else was too much. I am on Keppra and Clonazpam. Lamtical is another choice. And I have the best Dr. in the world, so all of this is possible. You should see an epilepsy specialist. reg. nueros don't really get it.