Hi Steve,
Thank you of letting me know that I'm not the only one who's continued to see the same neurologist that long. I began having seizures and was later diagnosed w/ epilepsy in '74. Only seeing a family doctor until '80, then I began seeing a neurologist at Univ. of Maryland Hosp. in '80.
A seizure around one every 3-4 weeks.
In '96 I got me put into surgery which required allot of tests, I remember mentioning that I was thinking to have it performed at Mass. General Hosp. (at Mass. Inst. Tech.) or Cleveland Clinic. He asked if I'd consider not traveling so much, and have it performed by a neurosurgeon there. I agreed and he designed it and it the neurosurgeon performed it, the operation was unsuccessful.
Prior to the operation and for along time I was conscious of seizures occurring once every 3-4 weeks, that didn't change; but, I did receive verbal-memory loss. Which I now expect as my usual way of being.
In '08 I began to see a doctor at J.Hopkins Hosp. who'd been a past student of my first doctor. He told me that he wanted to put me on a test project of the drug, lacosamide, brand name is Vimpat. Marketed by UCB which also markets Keppra.
My seizure frequency is now one every 5-8 wks., twelve once.
Now I've wondered about surgery again?
Tim < tbb1@prodigy.
____________
From: no_seizures_
To: epilepsy@yahoogroup
Sent: Saturday, July 4, 2009 8:42:12 AM
Subject: [epilepsy] Re: misdiagnosed
Hey Tim,
I know where you are coming from from a different angle. Having epilepsy since 1975 seeing only my general Dr. then went to a neuro in 1988 when my seizures where increasing. All the years I saw this neuro he tried the different meds. Tried adjusting dosages BUT, he had EEG's to look at, had MRI's to look at also. Why the bleep he couldn't understand what it showed was because of his ignorance! Idiot or ignorant me didn't realize how poor a Dr. he was. I just figured if the so many different drugs didn't stop my seizures, I was simply one out of every four people with epilepsy who couldn't get seizures under control. He all of a sudden retires, I decide I'm only going to next see an epileptologist because that's what so many people in the group suggested to me. So did so and on my first visit he is constantly looking at my most recent MRI and EEG I brought with me from the neuro's office. As he is asking me countless questions! At that first visit tells
me he feels I could be a strong candidate for a left temporal lobectomy! He saw the scar tissue on the left side, explaining the complex partials I had was commonly caused by where the scare tissue was. Went on blah blah blah and within 10 months had surgery and have been seizure free since surgery. Why the bleep couldn't the neuro see this? That I would consider misdiagnosed! That neuro told me I couldn't have surgery blah blah blah. Could you image having the surgery years earlier like so many others? But on the other hand, I wonder if whats understood now as compared to then, would I have had positive results from surgery years earlier when epilepsy and the technologies of then where where they are now. Hey, having a successful surgery doesn't mean my seizures won't come back in the future! Never can I say my seizures can't come back. Hey, I have epilepsy and always will (smile). But Tim, if you have tried different neuros. even different
epileptogists, its simply might be that you are one in four people who have epilepsy and can't have seizures under control? Yea, we always never know for sure, always ask ourselves questions but hey, what you do have are good friends here who can relate to each other! By the way, the Wizard Of Oz was on TV the night before last! I watched with a few nieces, I felt proud them seeing me in the movie though the straw kept falling out of me (smile)! Take care Tim, keep a smile on your face!
Steve
--- In epilepsy@yahoogroup s.com, TIMOTHY BALDWIN <tbb1@...> wrote:
>
>
> I've been wondering about the cause of my uncontrollable seizures and the reason that they've never responded to the medicines which I've been prescribed over and over again. Maybe, all those meds. weren't developed for the type of seizure that I have. Has anyone wondered if they could have been misdiagnosed, and suffered from it the whole time?
> Tim B. < tbb1@... >
>
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