Confused by Diagnosis

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Hoping somewhere here may have had a similar experience or some insight into the diagnosis process because I am really confused by my doctors...

My Story:

I am 28/yo male who has been fairly healthy my whole life. Nothing crazy, but I have had issues with anxiety and OCD over the last few years. For the past couple months I started feeling really groggy with terrible brain fog. Would have random bouts of tiredness throughout the day and sometimes when driving or working on the computer i would feel a little funny (difficult to concentrate and am almost derealization feeling, poor memory, very mild confusion). All pretty generalized feelings that could be attirubted to anxiety and would come and go through the day. Felt like it mostly happened after eating but not exclusively.

Went to my PCP to figure out why i felt so out of it, I figured maybe winter depression or anxiety. He tested me for diabetes, lyme, all the standard blood tests, b vitamins,etc. All came back fine. Even did a glucose tolerance test to really ensure there was no diabetes. Totally normal. Did an at home sleep apnea test too which came back fine. When i mentioned my memory was kind of poor he deicded to do an EEG just to make sure there was nothing weird.

EEG came back abnormal. Showed slowing predominiatly over the left temproal lobe but sometimes generalized. No epileptiform activity was noted. He referred me to a neurologist because he wasnt sure what the slowing meant.

Saw a PA in a neurologist's office who after asking a few questions immediately wanted to diagnose me with epilepsy which i thought was crazy because everything I read about slowing online said it is non-specific and doesnt neccessarily mean anything (can even happen when just tired). I read this was the most common EEG abnormality. We held off on medication but decided to do an MRI.

MRI also came back somewhat abornmal due to 2 weird symmetrical "bright spots", though I have read this is also the most common MRI abnormality.

Sought out a second opinion from a neuroligst (not a PA) in a major city at a very well respected hospital. She felt that both the MRI and the EEG though abnormal were both non-specific and didnt indicate anything was really wrong but deicded to do a 48hr EEG to make sure.

48 hour EEG also came back abnormal. Though there was no actual seizure detected it did note slowing again and "frequent epileptiform activity" originating in the left hemisphere and sometimes difussing generally. My neurologist read the report and said I was having seizures (possibly subclinical) when I sleep (which i protested because the report clearly said no seizures were detected). Even after pointing that out she still felt it was epilepsy and that it is occurring only during sleep (which i m not sure how she determined that since the report didnt indicate when it occurred from what I can see). She put me on Keppra to prevent a seizure from occurring and then to be safe ordered a followup MRI in a few months to make sure those "bright spots" didn't progress to anything.

What I am confused about is everything I see online says to be diagnosed with epilepsy you need to have 2 unprovoked seizures. Can I be considered epileptic if I have never (to my knowledge) had a seizure? I know some can be subtle but I have never experienced anything that I would think to be a seizure occurring.

I am also confused about whether I can drive or not legally. The neurologist says she feels I am fine to drive since have probably never had a clinical seizure but when I read things from the DMV it says those diagnosed with epilepsy need to self report it and then cant drive for one year during which time they need to be seizure free (which I am not even sure how I would know I am seizure free since as far as I can tell I have been seizure free for 28 years...)

Anyone experienced anyhting like this before? Its all confusing to be because I feel like the doctors are treating/diagnosing just based on the EEG results as opposed to clinical symptoms (i.e. seizures).

Comments

Confused??? It can be. Now to

Submitted by just_joe on Thu, 2015-05-28 - 17:31

Confused??? It can be. Now to start with Anybody at any age can have epipelsy. If a person has 2 seizures that are known then they can be diagnosed.However with tests a diagnosis can also be made. The EEG is a brain wave test showing the electrical output comming from the brain. Abnormalities in an EEG could be spikes or waves but abnormalities are showing seizure activity in that area of the brain. Seizure activity does not mean you are having a seizure at that time. Now "All a seizure is is an electrical impulse going off wrong in the brain which can cause a chain reaction." SO the frequent epileptiform activity are electrical impulses that can go off wrong in your brain. As for the MRI that is actually a picture of your brain from all angles. In it thet can see groth deformaties.scar tissue and they will look for anything that might be wrong or different in it.You satted you never had a seizure that you know of. Well I never had one either. That is until they tested me. I had 20-25 different EEG's all came back normal. I had a test I wouldn't want my enemy to go thru (MRI of the 1960's) in it everything came back normal. The last test done that weeek was another EEG. In that EEG I fell asleep in. That EEG showed abnotmalities. The diagnosis was Grand Mal epilepsy, Petite Mal epilepsy and Focal Motor epilepsy.. My teachers had been writting me up for day dreaming in class for over a year. Many of those day dreams were absence seizures or simple partial seizures. So for a long period of time I had been having seizures without knowing it and the teachers had been writting me up for day dreaming in class when those day dreams were seizures. Its all confusing to be because I feel like the doctors are treating/diagnosing just based on the EEG results as opposed to clinical symptoms (i.e. seizures).The neurologist are basing their diagnosis in trests, Are you tested with a EKG for your heart? It too is a electrical output from the heart.If they look at your EKG and say you need to take this medication or yu might have problems will you wait until you have those symptoms? Bothe the EEG and EKG are electrical output ome comming from the brain the other from the heart. The EEG has electrical impulses not hitting right. and if they hit something just right it can cause a chain reaction (seizure)IF the electircal impulses hit wrong in your heart they can cause irregular heart beat, a heart attack, Intermitanta-fib,intermitant a flutter, Or jusr a-fib. I know about these tests since I have epilepsy and I have a-fib with intermitant a-flutter. Both issues can be controlled with medications. The neurologist says she feels I am fine to drive since have probably never had a clinical seizure. Go with what the neurologist stated. As for the DMV most states have 6 months without a seizure. Your neurologist knows the procedures that have to be gone thru. They don't like having to have a persons drivers license restricted, You are one of the lucky one. I have never driven. But I learned how to do what I need to do without haveing to drive. I hope this helps

Confused??? It can be. Now to start with Anybody at any age can have epipelsy. If a person has 2 seizures that are known then they can be diagnosed.However with tests a diagnosis can also be made. The EEG is a brain wave test showing the electrical output comming from the brain. Abnormalities in an EEG could be spikes or waves but abnormalities are showing seizure activity in that area of the brain. Seizure activity does not mean you are having a seizure at that time. Now "All a seizure is is an electrical impulse going off wrong in the brain which can cause a chain reaction." SO the frequent epileptiform activity are electrical impulses that can go off wrong in your brain. As for the MRI that is actually a picture of your brain from all angles. In it thet can see groth deformaties.scar tissue and they will look for anything that might be wrong or different in it.You satted you never had a seizure that you know of. Well I never had one either. That is until they tested me. I had 20-25 different EEG's all came back normal. I had a test I wouldn't want my enemy to go thru (MRI of the 1960's)  in it everything came back normal. The last test done that weeek was another EEG. In that EEG I fell asleep in. That EEG showed abnotmalities. The diagnosis was Grand Mal epilepsy, Petite Mal epilepsy and Focal Motor epilepsy.. My teachers had been writting me up for day dreaming in class for over a year. Many of those day dreams were absence seizures or simple partial seizures. So for a long period of time I had been having seizures without knowing it and the teachers had been writting me up for day dreaming in class when those day dreams were seizures. Its all confusing to be because I feel like the doctors are treating/diagnosing just based on the EEG results as opposed to clinical symptoms (i.e. seizures).The neurologist are basing their diagnosis in trests, Are you tested with a EKG for your heart? It too is a electrical output from the heart.If they look at your EKG and say you need to take this medication or yu might have problems will you wait until you have those symptoms? Bothe the EEG and EKG are electrical output ome comming from the brain the other from the heart. The EEG has electrical impulses not hitting right. and if they hit something just right it can cause a chain reaction (seizure)IF the electircal impulses hit wrong in your heart they can cause irregular heart beat, a heart attack, Intermitanta-fib,intermitant a flutter, Or jusr a-fib. I know about these tests since I have epilepsy and I have a-fib with intermitant a-flutter. Both issues can be controlled with medications. The neurologist says she feels I am fine to drive since have probably never had a clinical seizure. Go with what the neurologist stated. As for the DMV most states have 6 months without a seizure. Your neurologist knows the procedures that have to be gone thru. They don't like having to have a persons drivers license restricted, You are one of the lucky one. I have never driven. But I learned how to do what I need to do without haveing to drive. I hope this helps

Confused??? It can be. Now to start with Anybody at any age can have epipelsy. If a person has 2 seizures that are known then they can be diagnosed.However with tests a diagnosis can also be made. The EEG is a brain wave test showing the electrical output comming from the brain. Abnormalities in an EEG could be spikes or waves but abnormalities are showing seizure activity in that area of the brain. Seizure activity does not mean you are having a seizure at that time. Now "All a seizure is is an electrical impulse going off wrong in the brain which can cause a chain reaction." SO the frequent epileptiform activity are electrical impulses that can go off wrong in your brain. As for the MRI that is actually a picture of your brain from all angles. In it thet can see groth deformaties.scar tissue and they will look for anything that might be wrong or different in it.You satted you never had a seizure that you know of. Well I never had one either. That is until they tested me. I had 20-25 different EEG's all came back normal. I had a test I wouldn't want my enemy to go thru (MRI of the 1960's) in it everything came back normal. The last test done that weeek was another EEG. In that EEG I fell asleep in. That EEG showed abnotmalities. The diagnosis was Grand Mal epilepsy, Petite Mal epilepsy and Focal Motor epilepsy.. My teachers had been writting me up for day dreaming in class for over a year. Many of those day dreams were absence seizures or simple partial seizures. So for a long period of time I had been having seizures without knowing it and the teachers had been writting me up for day dreaming in class when those day dreams were seizures. Its all confusing to be because I feel like the doctors are treating/diagnosing just based on the EEG results as opposed to clinical symptoms (i.e. seizures).The neurologist are basing their diagnosis in trests, Are you tested with a EKG for your heart? It too is a electrical output from the heart.If they look at your EKG and say you need to take this medication or yu might have problems will you wait until you have those symptoms? Bothe the EEG and EKG are electrical output ome comming from the brain the other from the heart. The EEG has electrical impulses not hitting right. and if they hit something just right it can cause a chain reaction (seizure)IF the electircal impulses hit wrong in your heart they can cause irregular heart beat, a heart attack, Intermitanta-fib,intermitant a flutter, Or jusr a-fib. I know about these tests since I have epilepsy and I have a-fib with intermitant a-flutter. Both issues can be controlled with medications. The neurologist says she feels I am fine to drive since have probably never had a clinical seizure. Go with what the neurologist stated. As for the DMV most states have 6 months without a seizure. Your neurologist knows the procedures that have to be gone thru. They don't like having to have a persons drivers license restricted, You are one of the lucky one. I have never driven. But I learned how to do what I need to do without haveing to drive. I hope this helps

Confused by Diagnosis

Comments

Confused??? It can be. Now to

Submitted by just_joe on Thu, 2015-05-28 - 17:31

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