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Life Derailed/Rerouted - Misdiagnosis?
Mon, 07/13/2015 - 09:34Good morning to you friends from Houston, TX. I've casually been browsing these forums and after much prayer with my pastors, elders, 5 EEG's (including EMU and video EEG), along with an incomplete sleep apnea test, I'm at a loss. It's been since 2011 that my seizures suddenly came on, 5 times diagnosed PNES with the exception of the incomplete sleep apnea study where they claimed epileptic activity was registered. They would not send it to my doctors because I would not go to the ER by their protocol, it was therefore incomplete. I did not go to the ER because previous neurologists insisted on PNES. I am presently on the generic for Keppra Extended Release as well as Zonegran. The Keppra certainly helps to an extent but for a near 25 year old looking to get married, looking for jobs and wanting to get back on track, I'm at a loss and frustrated and reaching out. I can't count the number of falls I've had, nor the times I've injured myself. I feel I've lost control and I'm scared to do much beyond my normal routine for fear of the seizures, and with no explanation as to what's happening to me. I went through the PNES treatment route with therapy etc and it did nothing for me. If there's anyone out there that can just bring peace or helpful insight I'd really appreciate it. I feel like a burden to others.
Thank you everyone. Sorry I
Submitted by WeatherTracker777 on Mon, 2015-07-20 - 09:49
Thank you everyone. Sorry I have not seen your posts until now. I do agree, at this point, it could be a case of misdiagnosis as Amy said. Basically the top epileoptiologists I've seen in Houston diagnose it as PNES, suggest I get off all seizure meds, go into therapy and never return another phone call. So I see a therapist who insists its a neurological issue and she gets rid of me and sends me back to the neurologist. They're just done with you. My neuropsychologist is the one helping me right now and he at least has the medicine that gives me some relief.