Tests & Diagnosis

Confusion, frustration.  

This is what I've been seeing time and again in forums, discussion groups and personal conversations after someone gets the diagnosis of Epilepsy.  I myself felt the same way when the diagnosis was made.

In making a diagnosis of Epilepsy (Seizure Disorder) there are several tests that the patient must undergo.

• MRI - Magnetic Resonance Imaging, provides 3D visuals of the brain and it's structures.
• CT Scan - Computer Tomography, detailed x-rays of the brain.
• EEG - Electroencephalogram, electrodes placed on the scalp at various points in order to measure electrical activity in the brain. (Usually a sleep deprived EEG).
• Blood Tests/Urinalysis - a simple blood draw and a urine sample which will be used to determine if there are any underlying infections or causes for your seizures.

So you go in and have the tests done.  Later, your doctor or neurologist tells you that the results of these tests have come back "normal."  Then they place you on anti-epileptic drugs and you find you've been diagnosed with epilepsy or seizure disorder.

Wait, what?

That's when the confusion and frustration set in.  You think, but my tests were normal.  How can I have epilepsy or seizure disorder when all my tests came back normal?

A good neurologist will explain this to you.  However, many neurologists do not explain.  They just place you on anti-epileptic drugs and say we'll "try" this and see if it stops or lessens the seizures.

What I've learned through this confusing time is thanks to the Epilepsy Foundation and others who've lived with epilepsy for years.  I want to share with you as a newly diagnosed person what I've learned.

First what is the difference between Epilepsy and Seizure Disorder?

There is no difference.  I specifically asked my neurologist this question and he responded that the terms Epilepsy and Seizure Disorder are synonymous.   They are two different ways of saying the same thing.  If you are told you have a Seizure Disorder you in fact have Epilepsy.  Through out my journey I've learned that many times neurologists will use the term "seizure disorder" instead of epilepsy because they don't want to frighten their patients.  Even today many stigmas and fears are attached to the term epilepsy.

Next, the test results.

How can I have epilepsy if all my tests were "negative" or "normal?"

In order to understand we have to look at the tests and what they are used for in making a diagnosis.

The blood tests (and possibly a urinalysis) will be done to check for infections or things such as alcohol & drug levels in the blood that could be the cause of your seizures.

The MRI (with and without contrast) is used to look at the internal structures of the brain.  They can give a 3D view of the brain and it's structures with great detail.  The MRI is used to check to see if there is anything abnormal that could be causing seizures such as brain tumors, lesions on the brain, scar tissue, cancer, aneurysms and problems with the structure of the vascular system of the brain (blockages etc).   If your MRI comes back "normal" it simply means they could not find a direct physical cause of your seizures.

The CT scan is very similar to the MRI because again they are checking for any physical abnormalities which may be causing your seizures.

The EEG is the test that really makes you wonder when it comes back "clean/normal."

You would think if you are having seizures (abnormal electrical activity in your brain) it would show up on an EEG.  While some people may show some abnormal activity, most do not.  Why?  Well an EEG can only show the abnormal electrical activity while it's happening.  In other words you need to be having a seizure during the EEG in order for the activity to show up on the EEG.  If you do not have a seizure during the test, it will show as "normal."  Also, many times people with epilepsy have seizures that begin deep within the brain.  So deep in fact that the electrical activity does not reach the scalp and can not be detected by the electrodes placed on the scalp.  You have to remember that not only does the electrical activity have to pass through the brain tissue but also through the scull bone, tissue and scalp.  So if the seizure activity is deep within the brain it more than likely will not reach all the way to the electrodes placed on the scalp.

According to the Epilepsy Foundation, "When a person has two or more unprovoked seizures they are considered to have epilepsy."

So if your tests come out "normal," and you've not done anything to provoke the seizures (alcohol or drug abuse etc) you will be considered to have epilepsy.

But how did I get epilepsy?

That is a good question and many times a hard one to answer.  For some people there is a genetic link.  Others may have developed a syndrome or have a illness or injury which caused the epilepsy.  However, 7 out of 10 people with epilepsy will be considered "idiopathic" meaning the doctors have no idea why you have epilepsy.  Epilepsy in many ways is still a very mysterious disorder and more research is needed.

The next step after the diagnostic testing is finding a way to control the seizures.  You'll probably be placed on a medication to begin trying to control your seizures.  There are many different medications and your doctor/neurologist will decide what to try based on the type of seizures you have been experiencing.  You'll be started at a low dose, so don't get discouraged if it doesn't appear to work right away.  It will be a long road of adjusting medication levels, maybe switching medications and possibly using add-on medications (secondary anti-epileptic drugs at a lower dose).   These things will be determined by your doctor/neurologist.  If you have questions about anything dealing with your treatment plan talk to your doctor.  It's your treatment and your doctor/neurologist should be willing to discuss and answer any questions you have about how you are being treated.

My best advice is do not panic and take it one step at a time.  Ask questions and if you're uncomfortable with your doctor/neurologist don't be afraid to get a referral to another or find another.  Also, don't be afraid to seek out support!  Contact your local Epilepsy Foundation, find an epilepsy support group and be honest with the people in your life that will support you emotionally.  Whatever happens, never give up hope!

A diagnosis of epilepsy is not the end of your life, it's just a new journey with challenges and triumphs.  You might just discover it's a blessing in disguise.