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I'm disgusted
Thu, 02/22/2007 - 23:23The results are in from my last sleep deprived EEG, it was completely normal. Now in total, I have had 4 EEG's. #1 was sleep deprived and "was mildly abnormal showing low to moderate voltage sharp waves in the LTL." #2 was totally normal ambulatory EEG. #3 was abnormal ambulatory EEG "with mild/sharply contoured irregularities in LTL region with some focal mild to moderate slowing/theta at times." and this last sleep deprived #4 was normal.
I feel frustrated by my neurologist who seems on the fence about a diagnosis. She says she can't rule in or rule out TLE yet. Thusfar she says, my non-specific abnormalities are "suspicious but not definitively epileptic." I keep thinking, just how many "serial" EEG's are going to be needed?
I want to be seen by an epileptologist because they specialize in Epilepsy, and my neuro does MS, Stroke, and Alzheimers. I want a set of eyes that sees Epilepsy everyday and get their opinion. I dunno, maybe it's not worth getting another set of eyes on this...I am truly disgusted and frustrated by this whole process. I never thought it would be so long and drawn out.
Comments
Re: Re: I'm disgusted
Submitted by wldhrt13 on Thu, 2007-03-01 - 17:17
thanks for the feedback ragin6
I was lookin for feedback but didn't specify that expressly in my post. glad that you caught the inference though!
I will seek a second opionion.
thanks again :)
Re: I'm disgusted
Submitted by RobinN on Thu, 2007-03-01 - 23:42
I would get a second opinion too.
My daughter was diagnosed, but then that neurologist couldn't explain some of the seizure activity that she was having. She had vision lost that I believe was a result of the first medication tegretol. He didn't want to believe it. So we got a second opinion and it was with a epileptologist and they diagnosed her after 20 min of having PNES. I disagreed so they admitted her to have a VEEG. Her seizures are centered around her period though so of course for the 24 hr test (and of course she was hooked up for less than those hours, they did not capture an episode. They are adament, but I am trusting my gut and went back to neuro #1. I have learned that you just have to keep searching for that one person that will understand you, and then learn as much as you can to discuss it intelligently.
Specialists can also be short sighted, and only look down a narrow corridor.
Robin
Re: I'm disgusted
Submitted by ragin6 on Tue, 2007-02-27 - 00:07
I would get a 2nd opinion for sure. It sounds like you have a neuro. that doesn't have a clue. For example, if you have partial seizures in one of the temporal lobes the odds of having a seizure while hooked up to the machine are low. Usually an abnormal EEG along with an MRI or even just an EEG is enough to diagnose LTE. If your EEGS are "borderline" abnormal maybe a video EEG is necessary. A video EEG is when they admit you into an epilepsy center for a few days hooked up 24/7 and hope ypu have a seizure. I would get a second opinion first.