Generally when meeting a new doctor I prepare a mental list of questions and concerns for discussion. I rehearse the list countless times but when faced with the actual appointment I forget in large part what it was I intended to say. This time I thought to hell with it I am just going to write a list of instructions for myself. That’s right actual instructions. I tried to keep it brief 1/2 a page or so. My appointment today has left me in a state of turmoil. I was diagnosed with Epilepsy by Dr. R in the local hospital. Dr. R seemed certain of my diagnosis. Sam was present during all my appointments and he was under the same impression. I was transferred (or so I was informed) to a specialist in another hospital Dr. G so I could be evaluated for surgery. I even underwent the week long surveillance in hospital. Dr. G was not forthcoming with information on my condition. Sam also attended my meetings, we both asked questions and very little was ever revealed. During my week long stay I had 2 seizures the nurses monitoring me informed me that the seizures read on the EEG but my doctor later told me that the EEG had not picked up any unusual brain activity. She also discredited the previous EEG analysis of Dr. R (he had told me that there was activity as had the nurse administering the test). I asked her point blank could I have something other than Epilepsy and bizarrely she said no there isn’t any other explanation. When I told her I wanted to seek psychological treatment for Depression she advised strongly against it.
I requested a change of doctors in part because of communication difficulties. I just met with my new Neurologist will call her Dr. S and lo and behold she tells me I have PNES (Psychosomatic Nonepileptic Seizures) that could be the result of a Dissociative Disorder. Dr. G and Dr. S work together and I get the impression that they are good friends. Dr. S has access to all of Dr. G’s clinical findings. Not once did Dr. G ever tell me I had PNES. Sam accompanied me to the meetings to act as a translator and not once did he ever hear her say any such thing either. I am pretty sure we wouldn’t forget a thing like my diagnosis, at least he wouldn’t forget it. Now I am told that I need to go to a psychologist for treatment. Why on earth did Dr. G advise so strongly against it in the first place? If I had PNES and she knew that to be the case why didn’t she want me to receive treatment? I still receive notices every time I have a doctor’s appointment that I am supposed to be keeping an Epilepsy journal, I should know because I received a doctor’s appointment today reminding me to keep my journal. Why when I went to the emergency room did they mention Epilepsy when I apparently have no such diagnosis? It is all a little perplexing to say the least. I could have started treatment for PNES years ago and would have done so if only they’d clarified my diagnosis. Encase you are wondering/confused it was not Dr. S who rediagnosed me she was just reporting Dr. G’s diagnosis. Needless to say Dr. S did not believe me when I told her that Dr. G had never informed me. Had it just been me visiting Dr. G I could actually accept that I might have misunderstood because of the language barrier. I could even have accepted that I forgot because god knows my memory is horrific but there is just no way Sam would have missed it. Dr. G not only didn’t inform me of my diagnosis she also left me completely stranded. When I went to the psychologist I told them I had Epilepsy (it must also be in my records incorrectly) and so they didn’t consider Dissociation at all because as far as they were concerned my disassociation was explained by the Epilepsy. No telling what I might have gotten diagnosed with had I underwent an evaluation! God knows I have already been given a shit load of dangerous drugs.
As for how I feel about the diagnosis? Dr. S says that PNES seizures can look nearly identical to Epileptic seizures and you can’t always tell the difference without an EEG. If that’s the case then it is a plausible explanation. I feel utterly humiliated. I have told my friends and family that I have Epilepsy. I joined an online support forum. I identified with the disorder and it explained so much of what I was experiencing. There is an element of disbelief still but I will get past it and work with this new diagnosis. I am sure I will understand/accept more after I do some research. I am excited that I have treatment options whereas before medication wasn’t working. She told me over and over that PNES doesn’t mean I have fake seizures and that I don’t have any conscious control over my seizures just as I didn’t when I thought had Epilepsy. Of course I understand it intellectually but emotionally it will take a while. I am also embarrassed that I didn’t figure it out by myself (well I actually did consider that I might have some type of Dissociative Disorder). The thought that I might, with treatment, be able to learn again is just outstanding. I remember in high school during exam day I aced all the tests, top scores but I couldn’t remember having even taken the exams. The thought that just may be I could have that brain, that I might have that data stored in my brain, data that I might be able to recover is amazing. Even if I can’t recover lost/misplaced data, if I could learn again, make memories again that would be a dream come true. In the course of writing this I have already become more positive. Treatments going to be a bitch though I imagine I am going to have to poke around at all the mutilated ouchie bits. I am also a little pissed at Dr. G and Dr. R whom I actually did trust. While I am glad Dr. G did a lot of testing what the hell was she thinking not telling me about my diagnosis and advising against the only treatment that might work? I just have no idea.