Anyone else have a neurologist who seems not to know much about epilepsy?

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

M

Mike758

New
Messages
38
Reaction score
0
Points
0
I personally have had bad experiences with neurologists with my epilepsy, although I've been doing well with my treatment. I almost feel like they don't know what they're talking about. My first neurologist was a top rated doctor, the best neurologist in my hospital, and apparently did a lot of studies outside work. I saw her after my first tonic clonic seizure, and she diagnosed me with Lyme disease instead of epilepsy, even though my lyme disease tests were negative. I even mentioned to her "funny sensations" I had starting a few years before the seizure, which I later found out was partial seizures. I described them correctly and she looked at me like I was stupid. She also told me I can drive right after my Lyme disease treatment. When I asked things about my seizure, she didn't explain much and talked "above my level", and my pediatrition actually explained it better.

I had a second tonic clonic about 45 days later and switched to the next best neurologist right away. He came down to the ER and talked me, and sounded very good. He was pretty good too, he treated me to Keppra, and upped my dosage when I still had partial seizures. I've been symptom free of epilepsy for 7 months on 2000mg of Keppra a day. However though, he still seems to not know what he's talking about, and is just going through the motions. He also never returned my phone call when I called the office with a question once. He also said it's not normal for a 19 year old to have a migraine when I brought up I had one when we last met up, even though many kids have them, and after he made it seem like a big deal, he simply just told my to take an Advil next time.

It's hard to explain, but I've really felt my neurologists nerve really knew what they were talking about. I'm not too concerned because I'm fine, but if I have further issues I think I might follow up with a university doctor. Has anyone else been concerned about their neurologists?
 
I sat my neuro down once told him he wasn't leaving till he heard me out.
my doctor is a neurologist not an epileptologist (specializes in epilepsy) I've had bad luck with epileptologist my neuro knows more and listens to me.

Are you near a hospital/university? were you could call and make an appointment> or are there other hospitals around your area you can get to so you can check out other docs?

I'm near 4 hospitals that I can go and check out other docs.Than I can take subway up to 3 others if need be.


Belinda1217:twocents:
 
Contrary to what Belinda has said, I only see an epileptologist now because they work better for me. And finding one at a university hospital would be best. They have a little bit more knowledge of E than a regular neurologist. And if you feel she isn't listening, than definitely find someone who will.
 
Belinda5000 said:
I sat my neuro down once told him he wasn't leaving till he heard me out.
my doctor is a neurologist not an epileptologist (specializes in epilepsy) I've had bad luck with epileptologist my neuro knows more and listens to me.

Are you near a hospital/university? were you could call and make an appointment> or are there other hospitals around your area you can get to so you can check out other docs?

I'm near 4 hospitals that I can go and check out other docs.Than I can take subway up to 3 others if need be.


Belinda1217:twocents:
Click to expand...

I go to the hospital where I was born, they have about 4 neauologists I think, and two were my former and current one. Since everything so far has been working alright, I don't have much desire for other opinions. However though, of I have any further issues whether that be another tonic clonic or just partial seizures, I will definetely see another doc at a university. Someone already recommended a few to my parents. Ironically, my lousy first neurologist was a actually "upgraded" to a better hospital. I hate to judge, but me and my family feel she may have been sexist, but that's a long story
 
I hate to say it, but in my experience I have known more about many aspects of my epilepsy then either my most recent neurologist or the epileptologist I amd seeing now. I was actually the one who figured out the medication regime that has kept me seizure- and side-effect free for just over 2 months now. Neither of them had heard about SeizureTracker, neither of them tried to see if there was an actual pattern to my seizures, neither of them figured out the med changes, neither of them had ever heard of prosopagnosia (face blindness), my previous one had never drawn a lamictal level and my current one drew a level but wanted it followed up by a trough level instead of a peak level, my previous one had never even mentioned the VNS to me even though I was a good candidate for it (it didn't work for me, but he still should have talked to me about it) and so on. My pharmacist and a couple of the people here and my own research have been more help than the docs. I could go on, but you get the idea . . .
End of rant. At this point I don't plan on switching docs unless things get really out of control and I can't figure it out on my own.
 
I've had several really bad neurologists and I agree with Arnie and others, epileptologists are the way to go--or if you can't find one, continuing to look for a neurologist who really understands epilepsy. The comment about migraines in 19 year olds is really telling--a LOT of kids get migraines! Any neurologist should know that! Good luck in finding better care!
 
With mine it is obvious that he is trying to keep his own tail covered, he may have had a bad case in the past or something similar. but he is also still fairly young.

He is willing to listen and take my suggestions with medicine changes and stuff.
 
I too am of the opinion that most regular neurologists are not equipped to deal with epilepsy, and that you should see an epileptologist. I would suggest seeing an one at an epilepsy center in a major hospital. However, as Belinda points out the credentials aren't enough either. You need a doctor who is responsive to you, and who will help you with what you need. That's the most important thing. Unfortunately this may require trying a number of doctors. It's a royal pain, and may take a long time (like years), but if you keep moving forward and being proactive you will not regret it. Keep making appointments, and don't be afraid to see someone new.

This may help, regardless of whatever hospital you go to:

http://www.coping-with-epilepsy.com/forums/f22/report-part-i-visit-mayo-clinic-rochester-mn-23674/

I like my current doctor, and I've seen a couple others I liked. I can tell pretty much right away whether it is going to work or not. (And I have made the error of not following my better judgement about that, wasting time with a doctor I knew was not going to do the job.) A doctor has to understand what you are telling them, or figure out what you are not able to tell them, before they can do anything. If they aren't taking the time to find out they aren't doing their job.
 
Switching from a neurologist to an epileptologist was like night and day for me, and based on my own experience I would have to say it only makes sense to go with the one who actually specializes in epilepsy and seizures.
 
Matthew74 said:
I too am of the opinion that most regular neurologists are not equipped to deal with epilepsy, and that you should see an epileptologist. I would suggest seeing an one at an epilepsy center in a major hospital. However, as Belinda points out the credentials aren't enough either. You need a doctor who is responsive to you, and who will help you with what you need. That's the most important thing. Unfortunately this may require trying a number of doctors. It's a royal pain, and may take a long time (like years), but if you keep moving forward and being proactive you will not regret it. Keep making appointments, and don't be afraid to see someone new.

This may help, regardless of whatever hospital you go to:

http://www.coping-with-epilepsy.com/forums/f22/report-part-i-visit-mayo-clinic-rochester-mn-23674/
Click to expand...

:agree: And here is another list of Epilepsy Centers in the U.S.:
http://www.naec-epilepsy.org/find.htm
 
Wow, guess I'm not the only one then. Does anyone know why neurologists tend to not be so good? Is that the field where the people that "don't do so well" in medical school get pushed towards? Seriously, I thought I was the only one, but I just don't understand how patients without a doctors degree know more than a lot of these neurologists?
 
IMO there are two reasons.

1. Neurologists are more like generalists. They deal with all sorts of stuff involving the whole nervous system, not just brain disorders. I think this results in a different way of looking at things.

2. More importantly, they don't have the same training or experience. Regular Neurologists deal with all sorts of things. An Epileptologist has special training in epilepsy, and deals exclusively with epilepsy.

In the future I expect Epileptologists will be considered "standard" for treating Epilepsy. It seems to be a relatively new field.
 
You must log in or register to reply here.
Back
Top Bottom