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Was I misdiagnosed?

Thu, 04/28/2016 - 00:53
I'm new to the forum. I'm seeking a second opinion on if I have epilepsy or not from a different neurologist in a month, this time with a longer EEG study. I've had absence seizures since I was a kid, but never thought anything of them. I had an incident with serotonin syndrome about a year and a half ago and have had convulsive seizures ever since. The neurologist I was seeing at the time was a narcissistic ass with no intention of helping me - he conducted a 40 minute EEG without trying to trigger a seizure and told me I probably had conversion disorder because I had an abusive father...which was not fair for him to assume a condition without doing any thorough testing. In my gut I know that is not what's going on. I have Ehler's-Danlos Syndrome, POTS, neuropathy, and fibromyalgia. These seizures are often quite violent - usually I'm semi-conscious but can't remember much after nor can I control my body. I have rapid, flickering eye movement or they'll roll to one side or in the back of my head, violent jerking and muscle stiffening, breath holding, tongue biting, episodes that last a few minutes. I know that there is a possibility of epilepsy and the doctor didn't care to run the proper tests. I usually have a few seizures a week (I don't know if I have them while sleeping and I faint a lot). What I want is some advice for this new appointment. I want this to be a clean slate in a sense, I don't want any ideas being put in his head from the previous doctor not doing his job. How can I prove that these seizures do exist? I'm going to school for a PhD in aerospace engineering - bioastronautics to be exact. I want to figure out what's causing these seizures, whether it's epilepsy or not, so I can start getting better. And would it be possible for the convulsive seizures to start later in my life, and not in childhood if it was epilepsy? I'm 18 now and the convulsive seizures started at 16. These are really hard to deal with, and I was wondering how possible epilepsy was in this situation.

Comments

Your seizures need to be

Submitted by margiefox118@live.com on Fri, 2016-04-29 - 08:16
Your seizures need to be controlled in some way. You need medication to do so. Of course your intense emotions play a big role in your epilepsy-maybe they caused or are caused by your seizures-but this is an unknown thing .Sounds to me like yours could be hormone related- high estrogen levels can  do this. Are they worse just before your period? The episodes you had as a child were definitely epilepsy which has "evolved"  into a more intense form.As an intelligent person you must realize your brain is mal-functioing and you need to help it.  Before you try to find the cause give yourself treatment. Many types of epilepsy cannot be detected by an EEG-my own never was. Please don't think your next neurologist is stupid because he doesn't know ''why" you are epileptic. Seizures cause mis functions all over the body, this is Symptom of your epilepsy NOT the Cause. So little is actually known about the complex human brain- you may never know why you are epileptic. Epilepsy is not terminal it just needs treatment. Please don't  deny yourself this. 

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