arnie
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Sorry to mangle Hamlet, but I don't think Ophelia would mind, and she would probably rather see an epileptologist than go to a nunnery! 
Note: This turned into kind of a long post, and if you don't want to read it all, the main message is to switch to an epileptologist as soon as possible if you have any way to do so.)
But seriously, I will probably be on a soapbox about this for a while. I have already talked about this in a couple of other posts, but I think the subject deserves a thread of its own.
As many of you know, I have had a diagnosis of epilepsy and been on meds for over 30 years, and I'm fairly knowledgeable about many aspects of this condition. I've only had 2 neurologists in that time and have learned a lot of what I know through my own research. In retrospect, I probably felt I needed to do that research because I wasn't getting enough info from my neuros. My former neuro just retired and I had my first visit with an epileptologist on the 8th of this month. As a result of that experience, I encourage every single person on this board is to change from seeing a neurologist to seeing an epileptologist as soon as you can, if there is any way possible to do so. For me, seeing one was like a whole new world had opened up around my epilepsy. My wife was with me and were both absolutely amazed at the obvious high level of knowledge this woman had compared to the neurologists I have seen. When she was asking about my history and what my previous docs had told me, what tests they had run, and a number of other things, it was easy to see that she was very dismayed about the level of care I had been getting. A corollary in my own life, as a professional bicycle mechanic and dealer with decades of experience, is when someone brings in a bike that has been worked on by an inexperienced or not-too-knowledgeable mechanic and I immediately see a half dozen glaring problems that had been ignored or unrecognized. A specialist in any field sees those things in a totally different way than others do.
One example: I had an MRI last November, and my neuro told me that there were some definite abnormalities in various areas, but that overall those were not too far outside of variations you would expect to see in anyone. When this new doc looked at the same MRI she saw a LOT of things that were very wrong. I don't remember all of it, of course, and I hope to get what she said in writing, but she was talking about bright spots here and there, small voids that indicated tissue damage, areas where fluid has probably accumulated, and lots of things indicating why my memory is bad, why I have that face-blindness issue, and so on. She said that both the initial people who interpret the results, as well as the neuros, simply don't see things that epileptologists do. I believe her 100%. Also, I told her that I had been the one who asked my neuro about getting a VNS, and that I have been the one to suggest various changes in the VNS parameters to deal with some of the side-effects. There was also a setting on my VNS which was at odds with one of the norms. She mentioned it and I told her that I had asked my neuro about it and suggested he change it, and he basically said he didn't think he would. She said it has to be changed and she did it. My neuro has dealt with a handful of VNS patients over the years, and she has probably dealt with hundreds and has had specialized training in it.
I know that there are really great neuros who are probably better than not-so-great epileptologists, but still, I think that overall you are MUCH better off seeing someone who actually specializes in this complex and confusing and highly technical disorder.
Well, I hadn't intended to write nearly this much, and I have work to get going on, but think very seriously about this and try to switch if you can. (My daughter, who has epilepsy too, is working on finding an epileptologist now.)
Have yourselves a great day!
Cheers! Onward!
Note: This turned into kind of a long post, and if you don't want to read it all, the main message is to switch to an epileptologist as soon as possible if you have any way to do so.)
But seriously, I will probably be on a soapbox about this for a while. I have already talked about this in a couple of other posts, but I think the subject deserves a thread of its own.
As many of you know, I have had a diagnosis of epilepsy and been on meds for over 30 years, and I'm fairly knowledgeable about many aspects of this condition. I've only had 2 neurologists in that time and have learned a lot of what I know through my own research. In retrospect, I probably felt I needed to do that research because I wasn't getting enough info from my neuros. My former neuro just retired and I had my first visit with an epileptologist on the 8th of this month. As a result of that experience, I encourage every single person on this board is to change from seeing a neurologist to seeing an epileptologist as soon as you can, if there is any way possible to do so. For me, seeing one was like a whole new world had opened up around my epilepsy. My wife was with me and were both absolutely amazed at the obvious high level of knowledge this woman had compared to the neurologists I have seen. When she was asking about my history and what my previous docs had told me, what tests they had run, and a number of other things, it was easy to see that she was very dismayed about the level of care I had been getting. A corollary in my own life, as a professional bicycle mechanic and dealer with decades of experience, is when someone brings in a bike that has been worked on by an inexperienced or not-too-knowledgeable mechanic and I immediately see a half dozen glaring problems that had been ignored or unrecognized. A specialist in any field sees those things in a totally different way than others do.
One example: I had an MRI last November, and my neuro told me that there were some definite abnormalities in various areas, but that overall those were not too far outside of variations you would expect to see in anyone. When this new doc looked at the same MRI she saw a LOT of things that were very wrong. I don't remember all of it, of course, and I hope to get what she said in writing, but she was talking about bright spots here and there, small voids that indicated tissue damage, areas where fluid has probably accumulated, and lots of things indicating why my memory is bad, why I have that face-blindness issue, and so on. She said that both the initial people who interpret the results, as well as the neuros, simply don't see things that epileptologists do. I believe her 100%. Also, I told her that I had been the one who asked my neuro about getting a VNS, and that I have been the one to suggest various changes in the VNS parameters to deal with some of the side-effects. There was also a setting on my VNS which was at odds with one of the norms. She mentioned it and I told her that I had asked my neuro about it and suggested he change it, and he basically said he didn't think he would. She said it has to be changed and she did it. My neuro has dealt with a handful of VNS patients over the years, and she has probably dealt with hundreds and has had specialized training in it.
I know that there are really great neuros who are probably better than not-so-great epileptologists, but still, I think that overall you are MUCH better off seeing someone who actually specializes in this complex and confusing and highly technical disorder.
Well, I hadn't intended to write nearly this much, and I have work to get going on, but think very seriously about this and try to switch if you can. (My daughter, who has epilepsy too, is working on finding an epileptologist now.)
Have yourselves a great day!
Cheers! Onward!
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