Medical Misery

Hello Everyone,
I'm Sami and I'm 23 years old. On Valentines Day(2012), I was diagnosed with Epileptic Seizures (among other things... Chiari Malformation with Syrinx, gastritis, ovarian cysts, acute cholecystitis...) On St. Patty's Day, I was diagnosed with Nonepileptic Seizures. Shortly after, I was sent to Cleveland Clinic for a five day evaluation where they found only PNES. While I was there, I was on two anti-epileptic medications for all but one day. I don't feel like they were comparing apples to apples. Cleveland Clinic took me off all my AED's, then when I came back home my seizures got worse... and my neurologist would not return my phone calls about my concerns about being taken off all my meds. Long long long story short he ended up dismissing me as a patient! I guess I got too annoying for him! They would never call back for questions or EMERGENCIES!!! How rediculous!? I just wanted a straight answer... epileptic.... non epileptic... or both. After that I was left 'hanging' by myself until I was able to meet with my new neuro (today). When I met him today he was wonderful until I mentioned that I was also diagnosed with PNES. His whole attitude changed after that. He told me I need to excercise.... work on my internal self.... try to be happy... bla... bla... bla... I dont get it. Yet, he put me on not one, but TWO antiepileptic drugs.... so why put me on medication for something you dont think I have in the first place??? I am so sick of fighting everyone. I am in a great spot in my marriage, and in my relationship with my Lord and Savior Jesus Christ!!! I have amazing support from my family and friends. I just don't understand how they can keep saying it is all psychological when I dont feel like I am under emotional stress or have never been abused. If anything the doctors are causing the emotional stress! I just want some answers of why this is happening and what I can do to get them to stop. Does anyone out there have anything similar going on? I think there needs to be so much more awareness out there for people. So many people think you are just faking it and that is so not true. It is not a fun thing to have or go through. My heart goes out to all of you who are in the same boat as me. I have worked in the medical field for the past seven years and have experienced this first hand.... and even people in the medical field need education about this disease! There are so many people who do not understand what it is like. They think we can control this. They think we are trying to get attention. They think we are crazy... and I can tell you WE ARE NOT! This is 100% REAL!!!
samiannie813 samiannie813
May 16, 2012