First MRI after 20+ years of Seizures The MRI shows ZIP

[elicia]

I have had seizures all my life, i had them when i was a baby and took anti seizure medications then, they took me off it and i went all my child hood with seizures not knowing what they were, I thought i was just different, crazy even, didn't know what these "Spells" were but knew they were intense, aggrivating and getting worse over time. Finally 20 years ago i went to a doctor who did a EEG who said i had something wrong on the left side of my brain, he sent me to a Neurologist who wanted to do a MRI but since i didn't have insurance said "oh don't worry about it, it's only a 1 in 20 chance its really anything and i'm pretty sure it's just a scar from childhood from fever and let's just do tegretol. that started a long cycle of that drug till 2004 when i was finally switched to topamax but the bottom line is I was never checked for anything else, never had a MRI, just a ASSUMPTION by one neurologist who because i had no insurance said he thought that's what it was. Well here i am in 2009, still have seizures, they have learned what my medicine can and can't do, i have good days and bad days but some days the seizures are all day. Finally my regular doctor ordered a MRI the other day. It came back with NO abnormalities on it. I asked did they see a scar, and they said as far as he could see he couldn't see anything wrong with the scan, but i probably should go to a neurologist anyhow because he might be able to see something that he can't. What i want to know is, IS THIS NORMAL? It makes me feel like i felt when i was undiagosised years ago, that this is just me feeling strange and that maybe this is in my head. but i know it's not. I know these are real but the scan today makes me think Okay maybe it's not now. I thought for sure the doctor would come back today and confirm there was a scar, it would be like a vindication to me after 20 years that i had a answer to the puzzle, Now i don't have anything. I am back to square one. My husband seems to think i will go to the neurologist and he will probably look at the scan and see a scarring that the doctor didn't and confirm it but surely the doctor would have seen that. I am getting tested for Hypoglycemia, as they think that could be part of my problem as well, but right now i feel completely at a loss. i'm just curious if anyone else has gone through this with a MRI. Am I putting to much into thinking my regular doctor should have been able to see more on that scan today and that a neurologist will be able to see more? this just makes me feel so alone and grasping for answers.

[alivenwell]

Hi! Welcome to the site! I've heard of hypoglycemia causing a seizure-like experience. It might be a good idea to obtain a sugar monitor at your drug store and keep a record of your sugar levels. Some machines record the levels and graph them for you.

If you're doctor is a general physician, he/she may not be trained to see anything. Personally, I'd provide that MRI to a neurologist to confirm the information of a seizure disorder.

[RanMan]

Elicia,

After 29 years of experience with epilepsy, I can tell you this:
Sometimes a seizure can start very deep within the brain and will not show up on a MRI.
In many cases several tests will be required to get a reading ie: CAT scan, MRI, PET scan, etc. and could still be inconclusive.

In a lot of cases you could have a series of seizures in a short period of time and then no more for several years. It's almost like saying that it goes in to remission. Epilepsy doesn't go away but it is treatable.
Then something will trigger another one, like fireworks, sounds, smells, STRESS or a combonation of them all.

Randy

[elicia]

I know they don't go away, after this long, that much i'm sure of, what bothers me the most is i was sure after 20 years that MRI would show that "Scar" and it would confirm what the neurologist said was the cause of my seizures so long ago. when that doctor told me he didn't see one it made me feel like, everyone around me as well as myself was doubting the seriousness of these existing. Anyone that has complex seizures or simple complex seizures know or at least in my case i can now talk my way through them, i can have one and you will not even know i'm having one, I"LL KNOW but you won't, i'll feel it coming on and hate it the whole time but you won't ever know. used to though i had to leave the room, didn't know why i left the room and didn't know what happened when i did but now i have a little better grip on them but i feel they are evolving again. i think seizures learn how to work around medicines. least mine do. but when that doctor said Oh i can't find anything wrong it was like saying you are perfectly healthy and those weird feelings you get? hmmmm, must be just you. Seizures are already hard enough to explain to someone unless you have a grand mal, so i was really not hoping but just wanting to have a answer to the puzzle yesterday. Maybe the Neurologist will give me the answers the doctor can't or maybe when i see the doctor on July 1'st for the sugar test he will have more answers regarding the MRI but right now it just feels very frustrating knowing last week i thought i had a scar on the left side of my brain causing my seizures. this week i'm told i have a no brain abnomalities and no reason for my seizures. the feeling the nurses left me with when they read that report is the same feeling i had the first time i told someone about my seizures. a feeling of like well you say you are sick but you don't look sick and the records don't show you are either..... it's just really frustrating. but, like i said maybe the neurologist will be of more help.

[RobinN]

Hi Elicia - Welcome to CWE

We have been given all sorts of answers by doctors as to why my daughter is having her seizures. The only answers that matter are the ones that fit the symptoms that you are having. Doctors have been know to be wrong, tests are not perfect 100% of the time. You know this is occuring and you need to find out the cause.

I want to add to what alivenwell has said. My daughters seizures are due to Hypoglycemia and there is something called reactive hypoglycemia. You can be sensitive to certain foods. Believe me I was at a loss too. This information did not come from a doctors office. It has been found on the internet, putting two and two together. Keep a journal and keep asking WHY. Knowledge is powerful.

Also, there was a study done in Norway with children that are sensitive to gluten and dairy. Their EEGs were abnormal when they ingested these ingredients. So sensitivities to foods can change brain function. I am not saying that this is the cause of your seizures. Just showing you that you don't need to have a "scar" on your brain as reason. My daughter has a "birthmark" which was said was the reason for her seizures. She is now finding more control with nutrition, than she ever did on medication.

There is hope. Don't stop searching for answers. You are not crazy. It is real.

[elicia]

thanks,
it's really a hard journey, i keep telling those around me unless you have walked a mile in my shoes, my head even, you can't imagine what this is like, sure these seizures, seem easy to deal with, like i'm dealing with them but they are a nightmare, they are frightening. When a song on the radio sets them off and you can't reach for the radio to change it, or you are chewing gum and it sets off a seizure and you can't reach in your mouth and take the gum out for that few seconds the seizure is happening, it's a nightmare. so yea, for me they are real, i need to know why i have that nightmare. i need to know why they happen to me and if it's not something that requires the topamax and instead needs a different medicine, then i need that to be addressed. i went years on tegretol thinking one thing was wrong with me only to have them tell me now they don't see that on a MRI, so yea, i need answers. My husband seems to think i would have more symptoms if it were low blood sugar than just seizures, being emotional at times as i am, and having sugar run in my family. but i don't know. I guess the blood test will show. thanks for everyone's input!

[RobinN]

It is a difficult journey. I can't even imagine. All I know is the journey that it has taken me on, being the caregiver to a minor child.

My daughter has no other symptoms. A simple blood test did not show this. It needed to be a 3-4 hour glucose tolerance test. Actually blood tests are limited too. I am also on the search for the WHY in this diagnosis. It isn't just a blood sugar issue. It is what is causing the body to react this way. I was reading up on leptins this morning and their effect on insulin. This can cause hormonal imbalances, and emotional issues.

Doctors can guess with the medication. But it is just a gamble that one with take better than another. Seizures are only the symptom to the problem. You have to dig deeper to find the WHY.

Please know that you have a support system here, with many that have dealt with questions from time to time. It is an emotional journey, and one that nobody should have to endure. However I am reminded of this:

[Nakamova]

Hi Elicia --

Over 50% of epilepsy cases are idiopathic -- i.e., the doctors don't know what the cause is. So you're not alone! It would be nice to know the root cause of the seizure, but sometimes there's no way to be sure. And it might be more than one factor. (In my case, my best guess is a tiny scar that made me susceptible, plus a perfect storm of triggers -- I had a major head injury when I was 5 years old, but didn't have my first seizure until 30 years later, when I was extremely overstressed, overtired, and underfed). If you CAN isolate a trigger that's terrific, and dietary/blood sugar places are a good place to start. As Robin says above: "The only answers that matter are the ones that fit the symptoms that you are having. Doctors have been known to be wrong, tests are not perfect 100% of the time. You know this is occuring and you need to find out the cause."

[Sharon]

your story sounds a lot like mine except i was born with seizures, at that time they called them grand mal. I grow out of them when i was 11 years old and have been off the meds since i was 12 years old. I am now 32 years old and just a week ago out of the blue i am having seizures again. I have had a seizure everyday. I have been to the hospital and they have tested my blood which came back normal, I had a CT scan done which also came back normal. The doctors do not know why i am having seizures again. I can not get into brain doctor until September. The ER doctor said that i also have what is call "todds" what that means is after i have a seizure one side of my body i can not feel for up to 48 hours after the seizure. I am going to my pcp tomorrow and i hope he can help me with this. I am confused and scared.