Coincidence? Craziness What the heck does he mean?

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SoonToBeMommy

SoonToBeMommy

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As you all have seen I am still struggling for a diagnosis. I am kinda getting really frustrated again here. The neurologist I currently have is an Epileptologist. Or so says his degree. He has done numerous eegs and say I have abnormal spikes and waves, but its not epilepsy. He also says I have a lot of episodes, but nothing shows up on eeg. Ativan usually takes me out of them, but he says its not epilepsy. Also my father, aunt, grandma and several cousins all have epilepsy but he says that would have nothing to do with me. Also on top of it I told him about having spinal meningitis as an infant I was in and out of hospitals from about 3-4 months old until I was 1 1/2 or 2 years of age. Again he says this wouldn't affect epilepsy. I have looked this one up and although its rare it can happen. I am trying to get an appointment set up with a new epileptologist, but at the moment I am stuck with the one I have. I am very confused by all of his statements. Soooo...what are some of your opinions on all this aside from needing a new doctor.
 
I think it's a good idea to seek out another Neurologist Maybe you can do some research and find a better doc "one who listens to you about your symptoms" I have had seizures for many years now, and spent one week in the Epilepsy unit at my local hospital. My Neuro told my husband & I that I showed constant rapid spikes. She said : This is definitly
Epilepsy & they wanted me to have brain surgery to end the seizures. Don't get me wrong, I don't want to convulse any more, but brain surgery??? No way! I take clonazepam & it does help more than the countless other meds i hve taken. Good Luck to you & your baby girl!
 
Hey! The definition of epilepsy being two or more unprovoked seizures, I'd say you have epilepsy. Do you have grand mal type seizures? (tonic-clonic?) Also, unless he has another cause, then it is epilepsy by definition. If you have a metabolic disorder or something there's no way around it.
 
Tonic clonics, simple partiak, complex partial and myoclonic jerks are the types I have. I am working on getting a new neurologist.

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Ok, you've had numerous EEGs that have turned out to be normal and this is so-called dr. is telling you that you do not have E. You are in the right direction in seeking another opinion. But apparently this dr. isn't aware that nearly 1/2 of EEGs do appear normal during testing because you're not seizing during that time, therefore it will appear so.

http://www.epilepsy.com/epilepsy/eeg_normal
The EEG records the electrical activity of the brain. During a seizure, the electrical activity is abnormal. Once the seizure is over, the brain rapidly returns to normal in most individuals. When an EEG is done several hours or even days later, it misses the changes in electrical activity that occurred during the actual seizure.

The likelihood of recording a seizure during the EEG is small. The EEG generally records brain waves between seizures, called interictal brain waves. These waves may or may not show evidence of seizure activity. The neurologist looks for spikes or sharp waves ("epilepsy waves") to confirm the diagnosis, but the absence of these abnormal brain waves does not eliminate seizures as a possibility.
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In the meantime, can you ask for a VEEG?

http://www.epilepsy.com/epilepsy/testing_videoeeg

In video-EEG, you are videotaped at the same time as your EEG is recorded. The recording is carried out for a long period of time, often several days. The doctor usually views the video and EEG images side by side on a split screen. In this way the doctor can see precisely how your behavior during seizures is related to the electrical activity in your brain.
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Just as a note: if your seizures are not epileptic, it doesn't mean they are psychological either. There are a lot of other causes of seizure-like episodes that have organic (as opposed to psychological) causes. Some are relatively common, and some not so common. Examples are some types of parasomnias, various types of dystonia and other kinesigenic movement disorders that occur in episodes. I sure don't know if this is what you have, but wanted to mention it so you don't get too concerned that if you don't have epilepsy it therefore implies your seizures are "in your head".
 
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masterjen said:
Just as a note: if your seizures are not epileptic, it doesn't mean they are psychological either..............
I sure don't know if this is what you have, but wanted to mention it so you don't get too concerned that if you don't have epilepsy it therefore implies your seizures are "in your head".
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The seizures that are "in your head" are actually in "one's mind", therefore they will probably be considered psychogenic seizures. They can be sub-conscious mental activity not being caused by abnormal electrical activity in the brain. Psychogenic means "beginning in the mind".

All seizures begin in the head, at least that's where my brain is. True, seizures can stem from other things, like meningitis, encephalitis, head injuries, brain tumors, even people with Type 1 Diabetes can have seizures from low blood sugar on occasion. Other endocrinological disorders can bring on seizures. And so can alcoholics when they suddenly stop drinking.
 
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But the big thing is he says I do have spike and wave patterns, but its not epilepsy. I mean ik the internet can lie but last I checked spikes and waves usually mean epilepsy. He is a very frutrating doctor especially when I try to explain things he talks to me like I'm stupid.

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The spike and wave patterns don't have a specific answer. They are abnormal, but to put it simply, there are too many things to list as causes for an abnormal EEG. Epilepsy, mental disorders, and side-effects to medication are just a few things that may cause an abnormal EEG. They are just a tool to help with a diagnosis.

I'm not the doctor and I have no idea how to read an EEG, but hopefully that can help put things into perspective for you.
 
He is a very frustrating doctor especially when I try to explain things he talks to me like I'm stupid.
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Then maybe he's not the right doctor for you, despite his expertise. You need to feel comfortable with and confident in the person treating you. They are supposed to be collaborating with you on your care, not talking down to you.
 
Absolutely. It doesn't sound like your doctor is actively looking for an answer, honestly. As usual, I wish you the best of luck.
 
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