TEMPORAL LOBE EPILEPSY

MEXICALI, B.C. MEXICO 26 OF MAY 2019. To: The Epilepsy Foundation, American Epilepsy Society, Canadian Epilepsy Alliance, Citizens United for Research in Epilepsy, Gene Reviews and Epilepsy Canada: Hello, my name is Michelle Acosta Moreno, im 38 years old and I´ve been diagnose with left temporal lobe epilepsy with auditory features, about two years ago. I am an Internist, and intensivist pneumologist, studied in Mexico. I am very interested in this disease, my doctor is an epileptologyst in Mexico City, Dr Horacio Senties de la Madrid. I want to know if you can help me with the Genetic evaluation of my disease because I have been researching a lot, and it seems that this is an Autosomal dominant partial temporal lobe epilepsy with auditory features, probably linked to a mutation in the LGI1 protein. It all started when I was 23 year old approximately,with tinnitus in left ear, vertiginous syntoms, apraxia, epigastric auras, the syntoms come and go with the years. It all got worst when I had my second child, I started to have de tinituss 24 hrs, with a sense of disorientation, chills, and hearing drums in my left ear. It all got very bad with slepping deprive, hormonal changes, working and then started to have palinacousis with music and sharp sounds, that’s when I went to my neurologist, got an MRI of brain and reported left mesial temporal sclerosis, got a 24 hrs EEG positive with epileptiform activity in left temporal lobe so my epileptologyt started me with several antiepileptic drugs; im with vimpat and briviact, also seizures are worst in my menstrual period so he added progesterone. So I have been treated with lamotrigine, oxacarmamazepine, topiramate and Keppra, with no good response, so by definition I have drug resistant epilepsy so Im trying to seek more help and genetic testing (my mom has syntoms of auditory epilepsy) and my kids have been having trouble in school, one is diagnosed with hyperactivity and attention deficit, and the small one (2 years) has also trouble with hiperactivity and is been actually studied. If you can help me with more information or if you know about the procedure to make the genetic screening test for this kind of epilepsy ill be very gratfull. Thanks a lot, I have never understud the importance of this disease, if i didn’t feelt it, I understand know that you can be seizuring all day with no one knowing why you are sleepy all day, disorientated, why you have depression, why you cant remember a face or a name with out people thinking you are being rude or crazy. DRA. MICHELLE ACOSTA