JME or PME?

[IhateTongues]

Hey all,

I want to ntoe that since I was 15 I've had myoclonic jerks. They've been uncontrollable and daily happenings of my life. Now when I was 21, I had my first tonic clonic. A couple of weeks ago a age 23, a year and a half later, I had two more tonic clonics.

My question here is... I was diagnosed with juvenile myoclonic epilepsy by doctor after first tonic clonic. Now with a couple more unfortunately under my belt, is that common with juvenile myoclonic epilepsy? Rare but occuring grand mals?

The reason I ask is because in my own research I see that PME, included neurological degredation. I can admit I don't feel as sharp as I was a few years ago. If thats due to the epilepsy, I dont know. Yet it makes me fearful now.

Anyone have experience with either of the disorders, can talk about it?

[joan]

Morning, what is PME? I have 2 kids with juvenile myoclonic epilepsy. Very normal to kick in at puberty. Very normal to be affected by lack of sleep and stress. My daughter had 1,000s of myoclonics a day. We went on Modified Atkins Diet and she is basically seizure free. She is also on 500 keppra. IF we did not stop her myoclonic, she could spiral into a grand mal.

Im pretty good with juvenile myoclonic epilepsy if you have any questions.

Be well
joan*

[drarvindr]

I'm assuming you mean progressive myoclonic epilepsy. Its exceptionally rare ( and usually fatal because of the genetic determinants at play). the odds go against it as i have juvenile myoclonic epilepsy too and i too have had breakthrough seizures ( generalised tonic clonics). I started with atonics , then absence seizures , then myoclonic and now the occasional GTC. Dont worry yourself about it . ( if your mother has epilepsy you may want to get tested for ragged red fibre syndrome - its very rare but known to cause myoclonic epilepsy and PME). Then again , MY mom is epileptic (diagnosed after me) and she has Temporal lobe epilepsy.
PME's seizures are mostly myoclonic which respond progressively less to anti-epileptic drugs. Not much else i know because i havent seen any in my part of the world ( i believe - not positive , mind you - they are most common in people of scandanavian origin but even then 1% of people who are diagnosed with juvenile myoclonic epilepsy and even then not confirmed)
Hope this helps
will look it up if i find more info will let u know
Sincerely
Arvind