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View Poll Results: How many Drs have you seen for your seizure control
1-2 Drs 43 27.22%
3-4 Drs 50 31.65%
Went to Mayo clinic 3 1.90%
Went to John Hopkins 1 0.63%
More than 4 Drs 61 38.61%
Voters: 158. You may not vote on this poll

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  #41  
Old 06-06-2008, 05:40 PM
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Dont forget to be informative about your condition when you go in. Be a different kind of patient. I know this sounds wierd but know your body , talk to your Dr. really talk to them. I know my Dr. so well now. We are good friends. It is kind of taking a chance and letting your dr. know who you are. Trust is a big issue.
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  #42  
Old 02-17-2009, 10:17 PM
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Thumbs down


I dont have insurance and only got into him because of the referal from hospital.
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  #43  
Old 02-19-2009, 11:16 PM
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I too had more Doctors than I can count most of them cannot treat me or half of them sent me to the hospital with allergic reactions with some of medicine they prescribed for me
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  #44  
Old 03-11-2009, 10:36 PM
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I had a harder time when I was younger , then I ended up at Harborview and have been there for I don't know 13 years. Something like that. But my son, I am in the middle of changing docs for him again.
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  #45  
Old 03-30-2009, 03:37 PM
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When I was new here and first diagnosed, I had only seen one doctor, and I thought it was overwhelming that people would need to see so many.

Now that I've had E for a few years I don't even remember how many doctors I've seen. And I can't pronounce most of their names because they are all so hard to say, hehe. Most of mine are at IU Med Center, but I still see the very first doctor I started seeing in the beginning.
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  #46  
Old 04-03-2009, 09:04 PM
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I had 1 Neurologist ask me...


If i was in love--because my EEG's are abnormal...he said that they are abnormal in about 10 % of the population, but didnt elaborate. Like okay, so i do some research and i see abnormal EEG's are common for these two: seizures disorders and a certain type of pshizoprenia. I am not p.hrenic and was not in love at the time. What a nerd who called himself an epileptologist.
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  #47  
Old 05-24-2009, 11:18 AM
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I've been lucky I guess...in the entire course of being diagnosed and treated for over 30 years, I've had about 4 doctors. 1 when I was living overseas as a toddler, my pediatrician here in the states, 1 after I graduated from college and worked in Iowa, and then my current neurologist. All my docs have been really great about getting me the latest info, and talking to me about issues I hadn't even thought about...such as weight control, diet, exercise, smoking, having children, fertility, stress management, etc.

In fact, my current neurologist actually gave me a hug when I told him I quit smoking....he's been on me for the last 10 years to quit. I was shocked he actually hugged me because he is a good Muslim, and only has touched me in the course of doing exams in the last 10 years...needless to say, I was a bit surprised...but it made me feel a lot better about quitting smoking too...gave me yet another person I don't want to disappoint.
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Last edited by skillefer; 05-24-2009 at 11:20 AM.
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  #48  
Old 11-13-2009, 03:21 PM
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I had only seen a few neurologists but found them to be extremely condescending & unhelpful. I always left feeling as though I was being blamed for the fact that they couldn't control my seizures.

Finally I decided to start looking for a new one but not to take any abuse. I went through over a half dozen one right after the other. The only one I liked didn't like me. My GP even said that we were going to run out of neurologists.

I finally lucked out & found a fantastic neurologist so I'm sticking with him but sadly I'm moving soon so I'll have to find a new one again. I'm not looking forward to that.
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  #49  
Old 11-13-2009, 06:41 PM
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I've worn out 3- neurologists in my 7- yr career. (When it gets this serious, you have to look at it differently, like a joke, kind of)
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  #50  
Old 11-21-2009, 05:00 PM
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I'm a bit surprised that the Montreal Neurological Institute hasn't been mentioned. It's world famous for its pioneering work in E by the late Dr. Wilder Pennfield. People from all over the world have been referred there.

(I was there for an assessment for neurosurgery. No surgery was possible b/c of the focus of the seizures in my brain. I'd have been worse off than before.)
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  #51  
Old 11-23-2009, 02:43 AM
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Zj, i


must say, I like your sense of humor. At least you're keeping your mind open!!
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  #52  
Old 11-23-2009, 11:08 AM
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  #53  
Old 12-17-2009, 01:10 AM
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Over the years many.
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DX with Myoclonic Jerks, Schizophrenia, and Partial Seizures.
Had childhood seizures, but they still linger.
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  #54  
Old 02-26-2010, 08:43 PM
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1st - Wife lost him when we got married and moved to CO
2nd - This was one I never came into contact with because this was when my wife was little and her parents wanted a 2nd opinion.
3rd - Seen this one when me moved to the Colorado Springs.
4th- Got this winner when we moved to Oklahoma City and gave us the boot last week. Good Riddance.
5th - TBD
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  #55  
Old 06-07-2010, 09:46 AM
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Originally Posted by McGill View Post:
I'm a bit surprised that the Montreal Neurological Institute hasn't been mentioned. It's world famous for its pioneering work in E by the late Dr. Wilder Pennfield. People from all over the world have been referred there.

(I was there for an assessment for neurosurgery. No surgery was possible b/c of the focus of the seizures in my brain. I'd have been worse off than before.)
That's where I'm being seen! They have a good staff and are pretty understanding.
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  #56  
Old 06-16-2010, 11:45 PM
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So far I have seen just two neurologists, the first in hospital. He did not listen. He told me possibly my seizures were caused by snoring, after I had explained in detail that they happened during the day when I am wide awake and at night before I fall asleep and in the am when I wake up. At none of those times am I snoring. Needless to say, I did not follow up with him when I was discharged.

My GP was clueless too.

Recently I started seeing a new neurologist. The first visit I liked her, although she was in a rush to see me out the door since she was suffering from migraine.

I think others on this board might call her a pill pusher. *sigh* So far the meds have not made a significant difference but I am not yet up to a "therapeutic dose" of Vimpat, my latest medication.

On the last visit she told me my seizure were caused by childhood spiral meningitis; today I told her about a concussion I suffered (unconscious for three days) and now she says that has caused them. Both of these bits of history I mentioned myself; I got no questions about previous medical issues / damage to my head. Possibly it's not important to know the likely cause?

I've had a number of EEGs which showed nothing out of the ordinary. She ordered another one, which gave the same result. I really and truly would like to understand what is going on. I am bewildered and scared by these episodes.

Again, maybe she thinks it's not really important to know what part of the brain is misfiring since she is counting on the broad spectrum medication to control it. This is my body, and I DO want to know. I also want more information about additional things I might do to lessen the chance of having seizures.

She always seems in a rush though and I get escorted out the door once I have my prescription in hand.

I would go to Rush Medical Center to see one of their epileptologists, but I cannot drive now and would have to depend on my mother driving me. She is too ill and handicapped to be away from home for so long. She depends on oxygen.

/gripe
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  #57  
Old 08-16-2010, 03:28 PM
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Well I have one consultant but I've been seen by about 12-16 doctors of that consultant.
All of which are NOT in touch with each other,so I have to explain my epilepsy and what has been going on at EACH appointment.Which is very frustrating.

The service here in Ireland is terrible.
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  #58  
Old 12-09-2011, 04:08 PM
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I have only ever seen neurologists/epitiologists in regards to my epilepsy.
I have had the same regular neurologist for the last 9 years.

Because I had brain surgery in March I am part of a epilepsy program at the hospital where I had my surgery.
The epilepsy program has a group of neurologists/epitiologists & neurologist psychs who all work in together. As part of the program I have to visit the epilepsy clinic at the hospital for follow up appts with one of their neurologists & neuropsych.

At the moment I don't have to see my regular neurologist while I am part of the epilepsy program but the neurologists & neuropsych I see at the program always keep my local neurologist up to date with my progress.

Last edited by CQ:); 12-09-2011 at 04:10 PM.
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  #59  
Old 12-09-2011, 05:21 PM
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i believe im at 11 ... if im not forgetting any , 1 family doctor ( the one who first suspected E) then a toooon of neurous & 1 epileptologist while in the hospital for my video EEG
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  #60  
Old 12-09-2011, 06:35 PM
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I don't know anymore how many Dr.s Ive had or do have. Most of them are at Harborview. Hey CQ, my sons great gramma is from Australia. She calls him Master Alexander. lol. I love her. She has my Birthday to.
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