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Another epileptologist recently just told me that I do indeed have JME (Juvenile Myoclonic Epilepsy and NOT focal)! Since I was diagnosed by EEG in my past and I have experienced myoclonic seizures as a teenager but, throughout the day and it says here that's what you were diagnosed with, so that's what you have. Also, JME is on a spectrum with it over here being the mildest and over here being the most severe. It's a spectrum!🤷
Right, now I am just so confused
Everything I experienced were not… read more
I have had epilepsy for over 50 years old, have had just about every possible test. EEg’s never worked for me. The depth electrodes test did. Electrodes inside a person’s brain gives real results. This test tells You where Your seizures are coming from, the right or left side of your brain or both. Now I have the VNS (vagus nerve stimulator) implanted inside me. If You are getting tired of tests that don’t really work well then the depth electrodes is the one that works.
Normally when they talk about spectrum it means you would also have some autistic traits. It has been well known for a long time that if you have epilepsy then you can also have autism.
@A MyEpilepsyTeam Member I have JME. I was diagnosed at 9 years of age after a Tonic Clonic Seizure. I also have Myoclonic Seizures and Cluster Myoclonic Seizures along with Complex Aware and Unaware Seizures.
They can diagnose in a EEG, mine was done on 7 day VEEG where I was titrated off my medication to induce a seizure. It showed generalised spike and waves over both hemispheres.
They probably saying “mild” as it is controllable in 80% of cases and people go into remission if compliant on medication.
Mine went into remission for 20+ years, no seizures at all and two years ago started again and now I have Generalised Refractory Epilepsy.
Hang in there, sometimes answers come with time.
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