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Old 07-11-2010, 12:17 PM
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Red face EEG False Positive?


I've read a lot about false negatives (or EEG's that came back normal when someone clearly has seizures) on this site. But there's not much mention of it happening the other way around. I asked my neurologist this question and did not get a straight answer. The reason I ask is because we're not sure if I've had actual seizures or not. (not tonic clonic's, as that would be pretty obvious, but complex partial's). I had 2 abnormal EEG's 5 years ago, and a normal one this past Spring. These episodes are so few and far between it's hard to "catch" one. The last time it might have happened was on 3/30/10, and then maybe an aura in April. Before that, it had been 5 years!
I haven't been driving since March, which has put a huge strain on my family. I was fired from my job 2 weeks after telling my boss I may have had a seizure (I'm a nurse). And I'm really reluctant to take these life altering meds unless we're sure I really need them. I am seeing an epileptologist in Boston, but she can't get me in until the end of September. (And yes, I am on a cancellation list). The neurologist I'm seeing now is a money hungry jerk, but he's all we have in the area. So I'm trying to figure this out on my own pretty much. I've got three kids depending on my being able to function and bring in an income! So I'm looking for any answers I can gather. So back to my original question -
Does anyone here know anything about "false positive" EEG's, or better yet does someone know of a related study? I've searched myself but come up with nothing. I've noticed though, that some of you guys are total "Google Masters". Thanks guys, for even reading this. I know I don't say much, but I read these forums all the time. Many of you feel like family to me, even though I've never met you.
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Old 07-11-2010, 01:50 PM
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Hi, Crystal,

I don't blame you for not wanting to go on the meds. I'd avoid it, too, if I could. IMHO, you may want to wait until you see the epileptologist before you believe the diagnosis.

False positives are possible - there is an average of a 2% false positive in the general population. From what I've read it depends on the expertise of the person reading the eeg. He/She needs to be able to sort out eeg abnormal waves that are due to causes other than epilepsy.

Here's some related info:

http://en.allexperts.com/q/Epilepsy-...Inaccurate.htm
http://pb.rcpsych.org/cgi/content/full/27/5/171
http://www.aesnet.org/go/publication...w=1121&id=9349
http://emedicine.medscape.com/article/1139025-overview

Quote :
Many patients (about a third) who have been misdiagnosed as
having epilepsy have had previous EEGs interpreted as epileptiform
that contributed to the misdiagnosis of epilepsy [3,70,71].
In fact, sometimes patients are diagnosed with epilepsy and treated
based solely on an EEG, despite that fact that they have no
symptoms or that their symptoms are not at all suggestive of seizures.
This has led many experts to point out that EEG can in fact
be bad for you. There are many well-described normal variants
that can be misread as epileptiform, but in reality the vast majority
of overread patterns are simple fluctuations of sharply contoured
background rhythms or fragmented alpha activity [7073]. The
reasons for the overinterpretation of EEGs are complex, and have
been discussed elsewhere [71,72], but the fact that the diagnosis
of seizures should be clinical cannot be overemphasized.
(From the epilepsy foundation: http://www.epilepsyfoundation.org/ep...f_epilepsy.pdf)
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Old 07-11-2010, 02:26 PM
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I think there is a false possitive and negative for EEGs. I had a test for autoimmune disease of my inner ear- which they believed caused my deafness. But Dr. said that sometimes is shows up as positive and usualy requires a second test to make sure. I don't think I got that second test- so I assume I don't have it. There are a lot of other things that might be happening to me if I did have it. Nothing has happened that I notice.

EEGs can read positive for people without Epilepsy- or the other way around. With me, my complex partials don't show up on EEG probably because they haven't happened while in the office EEG. It does show driving responce and my ambulatory EEG/Ambulatory EEG show spike-and-wave events on it.
Dr. also goes by what I say happens and what my family states that happens. You sort of can't really describe your own seizure if you're out of it and confused. It kinda makes me embarrassed to say: "Well...well...I am not real sure." It makes me think that the dr. probably thinks I totally stupid- but I always remember that they don't expect much of a description if you're not all there..

After you get your EEG- I would ask "What are the results?" and "Do you believe it to be a seizure or Epileptic waveforms?" (If it shows something) and if it doesn't, you might ask "Is it possible at all that it is a seizure or Epileptic waveforms meaning I have Epilepsy?" "Did you see anything that suggests anything?"
"Would another EEG be more definitive for my diagnosis?"

Your neurologist should be abe to give you a straight answer. I would sit there until he does- because its your right to know about your own health.
Also there is a video EEG where they keep you in the hospital for a few days to a week and wait it out and see if you have a seizure or Epileptiform on that EEG. But its exspesive and some people don't have resources for that- unless insurance helps.

Take care
Crystal
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Old 07-11-2010, 07:51 PM
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Endless - Somehow I knew you'd be able to come up with some info. When I go back to school for my BSN in the fall, can I call on you for research help? ; )
Thank you so much for replying. It's been really hard these past few months. I am hoping and praying this doctor at Brigham and Womens will be more helpful than the one down here. The links were really helpful. In one of them, the OP was asking pretty much the same exact question as me. How can we be sure this is for real? Back when I got this aura sensation in April (a really weird creeping/almost tugging feeling in my legs), I felt dread that a full on tonic clonic seizure was coming on, but a small part of me was thinking, 'well, if it happens, at least I'll know'. (I never was good with uncertainty LOL).
Well, thanks again for your help. I hope you are well.
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Old 07-11-2010, 08:20 PM
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Crystal, thank you so much for responding. I am hoping the doctor at Brigham and Women's will do just that, order a video EEG.
If you could have seen this neurologist I've been seeing the past few months, your jaw would drop. I have never seen a doctor so obviously un-concerned with his patients and all about the money. And I'm a nurse, I work with doctors all the time! As an example, he ordered an MRI (at my request) back in April. He couldn't fit me into his office schedule until mid-June. No one at his office would discuss the results with me and his receptionist told me he would not return my call regarding the results becuase: her exact words, "He has MRI's done on a lot of his patients, he doesn't have time to call each one about the results." I get that he doesn't get payed to have long, complicated conversations regarding test results w/ every patient. But at least with the negative results he could just say "It was normal, we can go over it in detail at your next appointment" or something like that. He was the one who couldn't see me for over 2 months! So I just went to the medical records dept. of the hospital where the MRI was done and filled out a form and got the report myself. It was totally normal. Don't you know that weeks later, when they called to confirm my June appoinment, they used the results to make sure I was coming!?!? The receptionist said in a leading way "and he needs to discuss your MRI results with you." Almost implying there was something wrong! They knew full well that it was normal, but they didn't know that I KNEW. If I hadn't known, I would have been worried sick, thinking, 'Oh God, I have a brain tumor or something.'
Getting any information out of him is like pulling teeth. He just wanted to give me a script, collect his co-pay and get me out the door. They even had a sign at the front desk stating "We do not accept credit cards. Payment is due at time of appointment. There will be a $20.00 charge if we have to bill you." I know most offices have cracked down on the whole co-pay thing, which I understand, but I never had one threaten to charge me extra to bill me! And of course, with my luck, all I had with me was my husband's flexible health spending account card, which is considered a credit card. So yeah, he got me for an extra $20.00. Oh well, hopefully I'll have better luck in Boston. I don't mean to sound bitter or anything, but I figured you'd probably appreciate the situation having had a lot of experience with doctors yourself. Thanks again for responding, and sorry for going of on a tangent. (I have a tendancy to do that, which is why I don't post very much).
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Old 07-11-2010, 09:33 PM
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Hi Crystalblue --

In the absence of definitive EEG/MRI evidence, the clinical evidence (i.e. actual seizures/symptoms/responses to meds) is all the docs have to go on. And the docs can be as frustrating as the epilepsy at times. I hope the Brigham and Womens doc will do the trick fro you. My neurologist is at the Beth Israel in Boston. I have mixed feelings about her but she is compassionate, so if the B&W person doesn't work out let me know.
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Old 07-11-2010, 10:29 PM
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Thanks Nakamova. Beth Israel was actually my first choice because they are, as you know, an actual epilepsy center. Also, I've had surgery there before. But my doc really wants me to see this lady at the Brigham. I'm very familar with the Brigham as I got care there for 3 of my pregnancies and my youngest son was born there. This doctor I'm being referred to is actually the head of their epilepsy dept. and runs the video EEG program. So at the very least, even if she turns out to be a total twit, I figure she must really know her stuff. Now if I could only get in with her a little sooner.....

I see you're in MA. I'm sure you don't want to say exactly where you are on a public forum, but are you close to the Cape? I was born and raised here, but if you go back a couple generations it's all South Boston Irish.
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Old 07-12-2010, 02:28 AM
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I was told by a doctor at one teaching hospital that it is quite common for neurologists not to read an EEG properly. I was told that the first EEG that was positive, was probably not read correctly. Even though I had witnessed Rebecca having a seizure in her sleep. I was told that not all neurologists are trained properly to know what the tracing is for epileptic seizure. I found that to be interesting. I wasn't sure if they were trying to appease me, as my daughter had also been diagnosed with psychogenic non-epileptic seizures by that same hospital.

Now that I know so much more about the process and the disorder, I would challenge their findings if I had to do it over again. I think I was told so many things to keep me in the dark.

It is my belief that if you instinctively don't believe that you are getting the correct diagnosis, wait on the medication. I wish I had never started it with my daughter. She had two years of hell. Now that she is med free, her life is returning to normal ( after making nutritional changes).
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Old 07-12-2010, 09:42 AM
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Crystalblue --

I'm in Cambridge (though it would be great to be nearer the Cape in this heat wave!). Never lived in Southie, but have fond memories of the Twelve Bens bar near Fields Corner in Dorchester.
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Old 07-28-2010, 03:08 PM
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Thats why my epileptologist wanted the actual discs and tests so he could read them himself.with my vague recollection,and later reading his summary,Im not sure if he would have come to the conclusion I even had epilepsy until he read the eeg for himself.His exact words were that he wouldnt get on a plane if I was the pilot if he saw that eeg,even if I had never had a seizure.Actually made me feel better that he was so assured of himself-it had been a long road up til then with various docs one of whom suggested I had a nervous breakdown-LOL
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