still having seizures and MRI is normal

Posted by maureendigi @maureendigi, Sep 19, 2023

I need advice, My brother has been having seizures since we were a year old and our whole lives we have been told that it is just epilepsy he’s even been told that it is just anxiety. over the years he has had a bunch of different cocktails of medications, and neurologists he is currently seeing an epileptologist who has recommended that he goes to the mayo clinic because he has had seizures more frequent in the last few months and it has been impacting his quality of life and he is super frustrated and wants answers we went to the clinic and they did an MRI which came back completely normal and they want to do a PET scan in November has anyone found any other causes for seizures other than the brain or is there anything else we should be looking out for it would be appreciated

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@maureendigi
A person with all normal tests can still have frequent Epileptic seizures. Was his EEG and neurological exam also normal?
Did any of the medications ever decrease the frequency of his seizures?
Does your brother have any psychological problems? If so, and those problems have gotten worse recently perhaps he may be having PNES (Psychogenic Non Epilepsy seizures brought on by psychological issues. Sometimes people have both Epileptic and Non Epileptic seizures (NES)
What type of seizures does he have?
Being admitted to the Epilepsy Care Unit is a good idea.
Here is some information about the Epilepsy Care Center at Mayo Clinic.
https://www.mayoclinic.org/diseases-conditions/epilepsy/care-at-mayo-clinic/mac-20350102
Take care,
Jake

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@maureendigi, Good Morning
As Jake has well said, a person can have epilepsy and completely normal exams. I have had epilepsy since I am a teenager, but just got the diagnosis when I was 48 years old (I am now 52 years old). My seizures until 2017 were rare (3 per year ) and very mild. I was just absent for 10 seconds, coming back as if nothing had happened. All exams I did as a teenager and adult until 2018 were normal, EEG and MRI. At the end of 2017 I had a burnout and my epilepsy advanced. It was just after correct orientations for an EEG (one night with no sleep or very little sleep) in 2019 that epilepsy showed its face on the exam. The standard MRI was also normal until 2018, but in 2019 I did a specific MRI and a small lesion on my hippocampus was there (I have temporal lobe epilepsy). But as one of the doctors told me when I asked why my epilepsy had not been pointed out before, the best diagnosis is done through an interview with a doctor and his evaluation.
I also do believe that an evaluation at an Epilepsy Unit Care is a good idea.
All my best!
Chris (Santosha)

REPLY

Too many doctors, including neurologists don't fully understand epilepsy. Doctors will fail to diagnose seizures in spite of overwheming evidence. I had a grand mal seizure in the hospital, I overheard the on-call hospital neurologist say to the nurse, "I would have thought he was faking had I not saw that". the nurse replied "we called in the stroke team". What he saw was my blood pressure exceed 300/140 and heart rate over 120 BPM. This is what I've learned over the years (1) an EEG will only confirm epilepsy if there is seizure activity at the time of the seizure and (2) an MRI may show the possibilty of seizures, however your doctor needs to properly interprete the results as seizure activity. My seizures started over 20 years ago, it took 5 years for my neurologist to find the right medication cocktail to control my seizures. Unfortunately, I started having break-through sezures 3 years ago, worst then ever. Only recently did an MRI confirm my seizures, dozens of MRI's over 20 year didn't. I've had the same neurologist 20 years, he reconized my seziures early on and started treatment when he saw the small strokes I was having because of them. I could have gone a lifetime without treatment had it not been for him. A stroke does permanent damage, a TIA temporary, a seizure may cause either. A seizure patient having a seizure-related TIA may show no evidence of a seizure because a TIA may heal. NEVER GIVE UP TRYING TO GET PROPER DIAGNOSIS AND CONTROL OF YOUR SEIZURES REGARDLESS OF WHAT DOCTORS MAY TELL YOU.

REPLY
@jakedduck1

@maureendigi
A person with all normal tests can still have frequent Epileptic seizures. Was his EEG and neurological exam also normal?
Did any of the medications ever decrease the frequency of his seizures?
Does your brother have any psychological problems? If so, and those problems have gotten worse recently perhaps he may be having PNES (Psychogenic Non Epilepsy seizures brought on by psychological issues. Sometimes people have both Epileptic and Non Epileptic seizures (NES)
What type of seizures does he have?
Being admitted to the Epilepsy Care Unit is a good idea.
Here is some information about the Epilepsy Care Center at Mayo Clinic.
https://www.mayoclinic.org/diseases-conditions/epilepsy/care-at-mayo-clinic/mac-20350102
Take care,
Jake

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both the EEG and neuro exam were normal he also had an MRI that was normal and he has grand mal seizures

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@santosha

@maureendigi, Good Morning
As Jake has well said, a person can have epilepsy and completely normal exams. I have had epilepsy since I am a teenager, but just got the diagnosis when I was 48 years old (I am now 52 years old). My seizures until 2017 were rare (3 per year ) and very mild. I was just absent for 10 seconds, coming back as if nothing had happened. All exams I did as a teenager and adult until 2018 were normal, EEG and MRI. At the end of 2017 I had a burnout and my epilepsy advanced. It was just after correct orientations for an EEG (one night with no sleep or very little sleep) in 2019 that epilepsy showed its face on the exam. The standard MRI was also normal until 2018, but in 2019 I did a specific MRI and a small lesion on my hippocampus was there (I have temporal lobe epilepsy). But as one of the doctors told me when I asked why my epilepsy had not been pointed out before, the best diagnosis is done through an interview with a doctor and his evaluation.
I also do believe that an evaluation at an Epilepsy Unit Care is a good idea.
All my best!
Chris (Santosha)

Jump to this post

he is going in november to have a PET scan with contrast maybe that would show something. was the MRI that you had specific?

REPLY

@maureendigi
Like @tonyde said
“Too many doctors, including neurologists don't fully understand epilepsy.”
If the tests are all normal the seizures are often caused by Epilepsy but too often doctors assume a person is experiencing psychologically induced Psychogenic nonepileptic seizures (PNES) brought on by anxiety, stress or other psychological issues.
That's a good reason for an evaluation at a level 4 Epilepsy center like the one at Mayo Clinic's which is rated #1.
Best of luck to you and your brother.
Take care,
Jake

Lots of doctors claim seizures are anxiety related

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@maureendigi

he is going in november to have a PET scan with contrast maybe that would show something. was the MRI that you had specific?

Jump to this post

@maureendigi Hi

Here are some more details of this MRI I did that pointed out the lesion on my hippocampus.

Technique: Magnetic resonance imaging obtained from sequences of multiplanar reconstruction Sagittal T1
weighted, volumetric FLAIR; Axial T2, diffusion, FLAIR; susceptibility weighting imaging (SWI) and volumetric T1
with post-gadolinium multiplanar reconstruction; post-gadolinium Coronal T1 with fat suppression.

Before this MRI, I did a Pet Scan and it did not point out this lesion.

Chris/Santosha

REPLY
@jakedduck1

@maureendigi
Like @tonyde said
“Too many doctors, including neurologists don't fully understand epilepsy.”
If the tests are all normal the seizures are often caused by Epilepsy but too often doctors assume a person is experiencing psychologically induced Psychogenic nonepileptic seizures (PNES) brought on by anxiety, stress or other psychological issues.
That's a good reason for an evaluation at a level 4 Epilepsy center like the one at Mayo Clinic's which is rated #1.
Best of luck to you and your brother.
Take care,
Jake

Lots of doctors claim seizures are anxiety related

Jump to this post

I totally agree with Jake. In 2018, when I still did not know I had epilepsy, I went to a neurologist and 2 psychiatrists who said I was suffering from depression. In 2019, my epilepsy was diagnosed by a third psychiatrist, but he did not understand well epilepsy. I went to many other doctors (neurologists and psychiatrists), and in 2021 I finally found an epileptologist, which made a great difference in my treatment. Epilepsy is a complex condition that many neurologists do not fully understand. The best is to be treated by an epileptologist!
Chris (Santosha)

REPLY
@tonyde

Too many doctors, including neurologists don't fully understand epilepsy. Doctors will fail to diagnose seizures in spite of overwheming evidence. I had a grand mal seizure in the hospital, I overheard the on-call hospital neurologist say to the nurse, "I would have thought he was faking had I not saw that". the nurse replied "we called in the stroke team". What he saw was my blood pressure exceed 300/140 and heart rate over 120 BPM. This is what I've learned over the years (1) an EEG will only confirm epilepsy if there is seizure activity at the time of the seizure and (2) an MRI may show the possibilty of seizures, however your doctor needs to properly interprete the results as seizure activity. My seizures started over 20 years ago, it took 5 years for my neurologist to find the right medication cocktail to control my seizures. Unfortunately, I started having break-through sezures 3 years ago, worst then ever. Only recently did an MRI confirm my seizures, dozens of MRI's over 20 year didn't. I've had the same neurologist 20 years, he reconized my seziures early on and started treatment when he saw the small strokes I was having because of them. I could have gone a lifetime without treatment had it not been for him. A stroke does permanent damage, a TIA temporary, a seizure may cause either. A seizure patient having a seizure-related TIA may show no evidence of a seizure because a TIA may heal. NEVER GIVE UP TRYING TO GET PROPER DIAGNOSIS AND CONTROL OF YOUR SEIZURES REGARDLESS OF WHAT DOCTORS MAY TELL YOU.

Jump to this post

@tonydez1967 Hi
What does TIA stand for?
Thank you!
Chris/Santosha

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My neurologist explained a TIA as a short lasting small stroke that in most cases doesn't cause permanent damage. It's the result of blood flow being blocked to the brain and a warning sign that a stroke will follow. You need to talk to your neurologist and cardiologist to determine the cause and how to avoid a future problem.

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