Anyone with PVNH?

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salsa-mad

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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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Hey Kimberley, welcome to CWE! Make yourself at home. :)

I don't know offhand if any members have PVNH, hopefully if there are any they'll respond. A recent member was diagnosed with grey matter heterotopia by several doctors, but then her newest neuro said that she doesn't have it. Go figure!

Congrats on being seizure-free! That's awesome. Many all your days be seizure-free :)
 
Hi Kimberley,
I don't post on the forums much these days but felt compelled to when I saw your introductory post because I, too, have a couple of rare genetic issues. So from someone who can relate to this aspect of the medical world, a big hello and welcome to you :)
 
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