JME or PME? Very Important - need all's opinion...

[AndrewIrish]

Okay, here's my ocnundrum?

whatever...

lol

I've already been dx'ed with JME for several years now but I'm having a rampup of my myoclonic jerks to the point where they're completely out of control now and I went status epilepticius as far as I can tell a lil over a week ago. I've had 5-6-7 TC's(my memory is bad), and they're slowly but surely coming more frequently even if they're still relatively infrequent(thank god.) I've always had a concern though of having PME(Progressive Myoclonic Epilepsy) because it mentions dimentia and 'cognitive decline' as a symptom which god help me I don't want to go through because I'm already caring for my father(who has epilepsy as well) who is going through dementia and Altzheimers at the ripe old age of 48 and it's saddening - I don't want to go through that or put a fmaily through that...

I understand PME is SUPER rare in all of the epilepsy... does anyone here have it? What I can research about it says it's indestinguishable from things like JME in the early years but gets progressively worse but is what I'm seeing happen with myself... but how much does one 'diminish' with PME? I guess I'm looking for a first-hand account here but I don't... think... anyone here has been diagnosed with PME but I may be wrong. Anyone know someone who had it or what the outcomes are? I think I have PME, which is why I'm frightened because I don't want to lose what little I got left of my rattled min even though I'm only 24 right now - I wanna be able to hold a conversation when I'm 30....

A snippet from the wiki-article about it...

"In the early stages, it can be difficult to distinguish progressive myoclonic epilepsy from benign idiopathic generalised epilepsies, such as juvenile myoclonic epilepsy. With PME, the initial effectiveness of anticonvulsant treatment diminishes as seizures become more frequent and neurological decline progresses. However, these can also be signs of anticonvulsant intoxication. The myoclonus in PME is usually severe and is the prominent seizure type." Fits me like a snug t-shirt.

I also have a question as to wether or not this may be an applicable diagnosis for me...

"Unverricht-Lundborg disease
This disease manifests between six and sixteen years and is most prevalent in Scandinavia and the Baltic countries. Myoclonus gradually becomes worse and less susceptible to medication. Cognitive decline is slow and sometimes mild. Patients typically do not live beyond middle-age, but there are exceptions. Phenytoin, an old and commonly used anticonvulsant, is known to seriously exacerbate the condition. It has autosomal recessive inheritance, and is caused by a mutation in the cystatic B (EPM1) gene on chromosome 21q22.3, which was discovered in 1996.
It has been described as the least severe type of PME"

I was taking Dilantin which sent my myoclonic jerks over the deep end... and that whateva disease is connected to PME...

 

[qtowngirl]

I don't know much about either of these so I'm sorry I can't comment.

But, a father who has epilepsy, dementia and Alzheimers all at the same time? And he's only 48? Omg I cannot imagine what you go through, added to the fact that you deal with epilepsy as well. I would be beyond devastated to see my dad like that. My heart tightened when I read your post, I am so sorry to hear this.
(((HUGE HUGS))) going out to you.

 

[AndrewIrish]

Thank you...

My dad and I have a strange relationship... He's a paranoid Schizophrenic(yea sumin else to his list...) and he abandoned me when I was 6 years old... my mom found him against when I was 12 and I saw him for a few months and then finally tracked him down when I was 18 and he was in rural kentucky. He's been a tested genius, constantly talks about Einstein's theory ofm relativity and his idea of universal 'inflation' but... we'll have the same conversation 7-8 times a day and I just saw him yesterday and he looked so tired, frail and lost as he held my neice in his lap (a 2 year old..)

I don't know if all these illnesses broke him down into something pitiful and that's why he and I have a relationship at all or if it's genuine... but the man's destroyed, I love him because he IS my father and it breaks my heart everytime I see him because I know he doesn't remember anything recently... he doesn't trip up and call people wrong names but he just.. avoids specific conversations because he admittedly can't retain memories longer then a couple of hours. When I lost my job because of a medical leave due to a tc seizure, my household went penniless and I had to send him, my sister and my neice to live in a homeless shelter. Thye just got back on their feet a few days ago, into a studio apartment together but... there's nothing left of him, in there. Just brilliance buried under a mind that can't record anything new... and I'd rather die then end up that way... He remembered I had a tonic clonic a lil over a week ago though, so that's something. He told me, 'That's inherited from my side, I have the seizures where I 'zonk' out and space out all the time.' He has constant absence seizures... and my grandmother, a ward of the state due to her schizophrenia has uncontrollable tonic clonic seizures but... add to the fact that she does crack cocaine on a regular basis, probably exacerbates that circumstance...

ON EDIT: Yes, I have some truly fucked up genes swimming around in my pool. Oh and my wife has Bi-Polar Disorder, though she's a sweetheart, I wanna strangle her sometimes. So I'm surrounded by(self included) people whose skulls don't mquite hold properly operating machinery within... oh and it's up there as a bet between my brother and I wether he has Myoclonic Epilepsy or Tourettes... his symptoms are hard to tell... lol...

 

[Nakamova]

I think to get a definitive diagnosis of PME, they use genetic testing along with EEGs and clinical info. As far as treatment goes, Dilantin is a no-no (as you mentioned) along with Tegretol and Lamictal. Meds with better track records are Phenobarbital, Clonazepam, and Valproate.

 

[Abynorml]

I hope it's just JME for you, I understand the fear of a progressive disorder, my tremors are a progressive neurological disorder similar to Parkinson's, it's well controlled now, but I'm only 35, by the time I'm 50... Well who knows they could find a cure, put in electrodes in my brain, or it might get a lot worse like I have a higher likely hood of getting Parkinson's and dementia, hell I could have PME I mainly manifest myoclonics, but the thing is worrying about that only makes everything worse, soo focus on now. Get some genetic tests done, live healthy and love the ones you got. Now if only I could take my own advice!