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what's wrong with me and why can't I find a good doctor???

Mon, 08/23/2010 - 20:21

I have deleted this post because I am tierd of people telling me to just accept the fact that I have epilepy! My problem is not acceptance. My problem is that I can't find a competant dr. After doing my own research I feel that I very well may have E. HOWEVER. My previous drs all said so based on NOTHING!!!! Which as a medical professional is completely irresponsible. They NEVER looked at test results... or even looked into my history. My first three drs didn't know anything about my family. ALL of them made their choice based on me having ONE seizure. ONE SEIZURE does not mean epilepsy! I have found a few friends on here... and some support... so thank you to those people. In the future... if you answer my posts... I would greatly appreciate you reading the entire post, as all of the above was stated previously.

Comments

Re: what's wrong with me and why can't I find a good doctor???

Submitted by phylisfjohnson on Wed, 2010-08-25 - 10:55

Eclampsia only happens during pregnancy. So, you can rule that one out.  However, there IS a significant overlap between migraines AND epilepsy and that might be what you're facing...

But first, let's find you a doc.  Here are some neuros recommended by eforum members based upon positive personal experiences:

Arizona -- Dr. David Labiner, University of Arizona, AZ

North Carolina

Dr. John DeToledo, Wake Forest Medical Center, NC

Dr. Laura Jozewicz, Raleigh, NC

Dr. James Parrott, Neuroscience and Spine Institute, Charlotte, NC

Dr. Sheila Smalls, Forest City, NC

And here are some of your diagnostic testing options: 

EEG (Electroencephalogram) – is used by a neurologist to determine whether there are any irregular electrical activities occurring in the brain which may produce seizures. It can help identify the location, severity, and type of seizure disorder. An abnormal EEG does not diagnose epilepsy nor does a normal EEG reading exclude it.

Video EEG Monitoring – is a prolonged simultaneous recording of the patient’s behavior along with the EEG. Seeing EEG and video data at the same time permits precise correlation between seizure activity in the brain and the patient’s behavior during seizures.

Video-EEG can be vital in the diagnosis of epilepsy and epileptic seizures. It allows the doctor to determine:

Whether events with unusual features are epileptic seizures…
The type of epileptic seizure, and…
The region of the brain from which the seizures arise.

Continuous Video EEG Monitoring – studies the brain waves over time with a patient staying in a special unit for at least 24 hours. Antiepileptic medication is stopped for the duration of this test, since the objective is for seizures to occur so the abnormal brain waves they produce can be recorded.

A video camera connected to the EEG provides constant monitoring, enabling the medical team to pinpoint the area where a seizure occurs and track the patient’s physiological response to the seizure. Continuous monitoring can also help distinguish between epilepsy and other conditions. It can characterize the seizure type for more precise medication adjustments, and locate the originating area of seizures within the brain.

CAT Scan (Computerized Axial Tomography) or CT (Computed Tomography) – is an imaging technique that is a safe and non-invasive, using low radiation X-rays to create a computer-generated, three-dimensional image of the brain. It provides detailed information about the structure of the brain by using a series of X-ray beams passing through the head to create cross-sectional images of the brain.

These may reveal abnormalities (blood clots, cysts, tumors, scar tissue, etc.) in the skull or brain which may be related to seizures. It allows physicians to examine the brain, section by section, as the test is being conducted and helps to point to where a person’s seizures originate.

MRI ( Magnetic Resonance Imaging) –  offers doctors the best chance of finding the source of seizures. Because seizures can arise from scar tissue in the brain, an MRI can show scar tissue and allow doctors to determine the nature of it. The images produced from the MRI are extremely precise. The information provided is valuable in the diagnosis and treatment of individuals with epilepsy.

Functional MRI – takes images in “real time” sequence and faster than the traditional MRI. By providing information about active brain tissue function and blood delivery, it is more precise and is often used before surgery to create a “map” of the brain and indicate where language, motor, and sensory areas are located. During the scan, the patient is asked to perform certain tasks, such as tapping fingers or repeating a list of words. From the image, the neurological team can locate the exact seizure area of the brain.

PET (Positron Emission Tomography) — is a scanning technique which detects chemical and physiological changes related to metabolism. It produces 3-dimensional images of blood flow, chemical reactions and muscular activity in the body as they occur. It measures the metabolism of glucose, oxygen or other substances in the brain, allowing the neurologist to study brain functions.

By measuring areas of blood flow and metabolism, the PET scan is used to locate the site from which a seizure originates. A small amount of radioactive substance is injected into the body. When this substance reaches the brain, a computer uses the recorded signals to create images of specific brain functions.

A functional image of brain activity is important because these changes are often present before structural changes occur in tissues. The information provided by the PET scan is valuable in both the diagnosis of seizure type and the evaluation of a potential candidate for surgery. PET images are capable of detecting pathological changes long before they would be made evident by other scanning techniques.

I hope this helps.  Let us know how you do.  Phylis Feiner Johnson   www.epilepsytalk.com

 

Eclampsia only happens during pregnancy. So, you can rule that one out.  However, there IS a significant overlap between migraines AND epilepsy and that might be what you're facing...

But first, let's find you a doc.  Here are some neuros recommended by eforum members based upon positive personal experiences:

Arizona -- Dr. David Labiner, University of Arizona, AZ

North Carolina

Dr. John DeToledo, Wake Forest Medical Center, NC

Dr. Laura Jozewicz, Raleigh, NC

Dr. James Parrott, Neuroscience and Spine Institute, Charlotte, NC

Dr. Sheila Smalls, Forest City, NC

And here are some of your diagnostic testing options: 

EEG (Electroencephalogram) – is used by a neurologist to determine whether there are any irregular electrical activities occurring in the brain which may produce seizures. It can help identify the location, severity, and type of seizure disorder. An abnormal EEG does not diagnose epilepsy nor does a normal EEG reading exclude it.

Video EEG Monitoring – is a prolonged simultaneous recording of the patient’s behavior along with the EEG. Seeing EEG and video data at the same time permits precise correlation between seizure activity in the brain and the patient’s behavior during seizures.

Video-EEG can be vital in the diagnosis of epilepsy and epileptic seizures. It allows the doctor to determine:

Whether events with unusual features are epileptic seizures…
The type of epileptic seizure, and…
The region of the brain from which the seizures arise.

Continuous Video EEG Monitoring – studies the brain waves over time with a patient staying in a special unit for at least 24 hours. Antiepileptic medication is stopped for the duration of this test, since the objective is for seizures to occur so the abnormal brain waves they produce can be recorded.

A video camera connected to the EEG provides constant monitoring, enabling the medical team to pinpoint the area where a seizure occurs and track the patient’s physiological response to the seizure. Continuous monitoring can also help distinguish between epilepsy and other conditions. It can characterize the seizure type for more precise medication adjustments, and locate the originating area of seizures within the brain.

CAT Scan (Computerized Axial Tomography) or CT (Computed Tomography) – is an imaging technique that is a safe and non-invasive, using low radiation X-rays to create a computer-generated, three-dimensional image of the brain. It provides detailed information about the structure of the brain by using a series of X-ray beams passing through the head to create cross-sectional images of the brain.

These may reveal abnormalities (blood clots, cysts, tumors, scar tissue, etc.) in the skull or brain which may be related to seizures. It allows physicians to examine the brain, section by section, as the test is being conducted and helps to point to where a person’s seizures originate.

MRI ( Magnetic Resonance Imaging) –  offers doctors the best chance of finding the source of seizures. Because seizures can arise from scar tissue in the brain, an MRI can show scar tissue and allow doctors to determine the nature of it. The images produced from the MRI are extremely precise. The information provided is valuable in the diagnosis and treatment of individuals with epilepsy.

Functional MRI – takes images in “real time” sequence and faster than the traditional MRI. By providing information about active brain tissue function and blood delivery, it is more precise and is often used before surgery to create a “map” of the brain and indicate where language, motor, and sensory areas are located. During the scan, the patient is asked to perform certain tasks, such as tapping fingers or repeating a list of words. From the image, the neurological team can locate the exact seizure area of the brain.

PET (Positron Emission Tomography) — is a scanning technique which detects chemical and physiological changes related to metabolism. It produces 3-dimensional images of blood flow, chemical reactions and muscular activity in the body as they occur. It measures the metabolism of glucose, oxygen or other substances in the brain, allowing the neurologist to study brain functions.

By measuring areas of blood flow and metabolism, the PET scan is used to locate the site from which a seizure originates. A small amount of radioactive substance is injected into the body. When this substance reaches the brain, a computer uses the recorded signals to create images of specific brain functions.

A functional image of brain activity is important because these changes are often present before structural changes occur in tissues. The information provided by the PET scan is valuable in both the diagnosis of seizure type and the evaluation of a potential candidate for surgery. PET images are capable of detecting pathological changes long before they would be made evident by other scanning techniques.

I hope this helps.  Let us know how you do.  Phylis Feiner Johnson   www.epilepsytalk.com

 

Re: what's wrong with me and why can't I find a good doctor???

Submitted by Ashleigh.Ruiz on Wed, 2010-08-25 - 18:08
Thank you for your response and all the info. Actually Preeclamsia does end once birth happens, but once it has become eeclamsia, it can last after birth. And seizures can occur up to 6 wks after. It doesn't happen too often, but it does happen. My Mother and aunt both had this occur. My pcp doesn't believe this was the case with me, but said that it can happen. Now I don't think thats what it was either, but I did at the time. I need to look into some of the doctors in NC. I don't think any are in my insurance plan, which means they would be very expensive. I had an eeg done today, so hopefully I'll find out something soon. I also found out from my mother that I would have episodes at night, when I was young, like absent seizures. She never knew what they were... but after reading stuff on here, we're thinking they may have been. After reading so much about epilepsy I'm thinking back to alot of times (with help of course) when different things occured, that make epilepsy a possibility.

Re: what's wrong with me and why can't I find a good doctor???

Submitted by phylisfjohnson on Wed, 2010-08-25 - 18:20

Let me know what happens with the EEG and what the next step is...     Phylis Feiner Johnson   www.epilepsytalk.com

 

Let me know what happens with the EEG and what the next step is...     Phylis Feiner Johnson   www.epilepsytalk.com

 

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