Hi! I’m new here. I’m 32 and was diagnosed with TLE in 2008 secondary to periventricular nodular heterotopia (PVNH) and a sub-arachnoid cyst the size of a ping-pong ball! It’s amazing how much you don’t know about your own body until you put it in an MRI.
I have enrolled in a genetic study on PVNH because not a lot is known about it, but because it is rare, it hasn’t really been studied... basically I have bits of brain in the wrong places which interferes with neural pathways or something. I’ve heard it’s universally fatal in males, so yay for being a girl! Unfortunately I have been told this type of epilepsy will never be 100% controlled, but I am so far four months seizure free! (My longest stretch was 363 days. I know, right??) I’m currently on Lamotrigine and Zonisamide.
Anyway, I’m glad I found this place. Just wanted to say hi and look forward to reading some of your stories.
Kimberley x
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I have enrolled in a genetic study on PVNH because not a lot is known about it, but because it is rare, it hasn’t really been studied... basically I have bits of brain in the wrong places which interferes with neural pathways or something. I’ve heard it’s universally fatal in males, so yay for being a girl! Unfortunately I have been told this type of epilepsy will never be 100% controlled, but I am so far four months seizure free! (My longest stretch was 363 days. I know, right??) I’m currently on Lamotrigine and Zonisamide.
Anyway, I’m glad I found this place. Just wanted to say hi and look forward to reading some of your stories.
Kimberley x
Sent from my iPhone using Tapatalk