Any doctors out there? Does any one have any information about a mutated gene that is link to 3 chronic illnesses: diabetes, hearing impairment, epilepsy? My daughter has all three of these conditions.
Is there any reason to seeks out other doctors for a cure?
Can she live a normal life?
Anne
I have JME and its extremely regulated with Keppra. I haven't had a seizure since I began the medication. The only problem is Keppra comes with some side affects, most notably irritability, excessive crying, and mood swings. I haven't gone off the deep in with those side affects, but I do notice I am a lot quicker to get angry than I used to be.
I have been researching JME for the past few months. My 12 year old son had one on Christmas and one on Easter. I'm struggling to find which medication we should try. According to a recent study, the theory of not being able to outgrow JME related seizures is not correct. As many as 30% of people diagnosed with JME 25 years ago are medication and seizure free today.
http://www.neurology.org/cgi/content/full/73/13/e64#top
Hi, ususally a period of 2 yrs without medication in which no seizure activity is seen is considered as adequate for assessment of remission.
Hey! I'm undiagnosed! But I'm sure I have JME .. It ONLY happens in the morning.. i have arm jerking and like a shock sensation. It goes away when I pop a xanax or If I wait it's like 15min - a half hour. I have Lost consciousness twice my mom said it resembled a stroke.. everyone thought i was dead! It started after I had my first child (16 Y.O.) Do you experience any of that?
Okay here's you answer... I've been reasearching JME for quite some time. I've found NO it never goes away. You may have a long time span before it happens again but usualy it never goes away w/o treatment! be careful you could have a grandmal with discontinuing your meds. so quickly.. I also found that my "attacks" happen around my menstraul cycle and when I'm under lots of stress or sleep deprived! My Doc. said that you could take a special seizure med before your period so you lessen the chances of having an attack. So maybe that's all you may need. I've never heard of these seizures to be outgrown?? But, hey anything can happen! I wish they would go away! I think they may ahve a link with hormones to be honest? B/c when I was pregnant they went away?? Well hopefully I'll hear from you!!