Bilateral Subependymal Nodularity???

[JemmAus]

Hi all,

I'm a regular in the MS community, but after my latest MRI I thought I'd better post in here. My next neurologists appointment isn't for 4 weeks hence the  need to ask.

I'm a 47yo female, mother of 4. Single. About 4 years ago I started getting migraines, one or two per month. IN Sept 2007 I had what was presumed to be a tonic-clonic seizure, as witnessed by my daughter, her partner,  and my youngest son.

CT scan showed no tumours or anything, EEG was ordered, came back normal.  

Then developed odd neurological symptoms, which were thought to be compicated migraines OR MS. Or both.


First MRI showed multiple white matter lesions in the periventricular and subcortical areas.

Neurologists were unsure for 3 years, with 4 of them scratching their heads going , 'is it MS? is it Mgraine?"
until this year whe I got a new neuro in a new town and he said,  you have multiple sclerosis.

ANyway, he packed me off for another MRI which I had just last week.

But it seems MS isn't the end of it. On top of the demyelinating lesions, it says:

"Bilateral subependymal nodularity".

So I googled that at it appears to be a malformation in the brain responsible for epilepsy?

Now I am wondering if some of my symptoms aren't  partial seizures. This happens frequently and realy scares me:

Overwhelming tiredness then fear.
Feel hot in the face
pressure feeling in my head
Ears feel blocked
Feel like I'm going to pass out
Feel sort of "not there"
Nausea
Can't walk properly while this is happening

It starts to pass after an hour or so. It absolutely terrifies me.

Does any of this sound like a form of epilepsy, and does anyone knwo about the 'subependymal nodularity"?

Cheers
Jemm

[COBOB]

There is disorder called Subependymal nodular heterotopia.  It is a rare inherited disorder where a part of the brain tissue is misplaced during development. More specifically, nodules of the abnormal tissue is found in the subependymal part of the brain.

The subependymal zone is a cell layer (include adult stem cells) surrounding the lateral ventricles in the brain.

Bob

[JemmAus]

bump