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heterotopic periventricular grey matter

Thu, 10/14/2010 - 12:17
my son is 12 when he was 3 he had a nasal dermoid cyst removed..since been 6 or 7 he has had very bad migraine..that can last for days he also so has very bad memory loss and as to be remined all the time about what he was sent to get or do sometime he doesnt even know what he is doing he will just stop and stare..now my gp is saying he thinks its a form of epilepsy..but my consultant neurologist has done c t scan said that fine did mri said that was fine to but then last week got same letter about the mri scan but it says....THERE IS HETEROTOPIC LEFT FROUNTAL PERIVENTRICULAR GRAY MATTER...now what im wanting help with here is can this gray matter caues a from of epilepsy?.my gp is saying to me he as epilepsy..consultant is saying no and as never said anything about the grey matter to me before ..doi need to see a new consultant?..my son gets so upset about the amount off things he forgets,he is on betta blockers for headpain but thats it also he gets pain behide his left eye where as he will just sit and cry.... only thing that helps the pain in his head is to lay in the bath flat with just his face out as he says that it makes it better ..im at a loss as what to do ..any help is very welcome

Comments

Re: heterotopic periventricular grey matter

Submitted by tiffinaz on Thu, 2010-10-14 - 16:35
I know this can be very frustrating and hard to understand. I was also diagnosed with periventricular nodular heterotopia(grey matter heterotopia) when I was 15. When I first went to see my GP he said it was just migraines and put me on beta-blockers too-which are not good for you. Then I finally got into barrows and was properly diagnosed. I have also had genetic testing which also verified I had this rare condition. I am now 26 and the older I got the worse my seizures have gotten. I just had surgery in June which diddn't work but worth a try so now my neuro. and just continue to play around with the meds. hoping to find the right ones. This is actually something you are born with but doesn't show up until early teenage years and is X-linked. You just need to find a good neurologist and ask lots of questions. The headaches go along with the seizures. Let me know if you have any questions. Be patient and persistent. Best Wishes.

Re: heterotopic periventricular grey matter

Submitted by coy on Fri, 2010-10-15 - 04:35
thank you so the grey matter is something and not nothing as my neuro keeps telling me? this is what is getting me down...

Re: heterotopic periventricular grey matter

Submitted by tiffinaz on Fri, 2010-10-15 - 07:17
Yes it is something! Get a new neuro. But this condition causes epilepsy

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