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  #1  
Old 08-31-2011, 06:06 PM
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Unhappy Normal EEG & MRI?!?!


How is that even possible? Do most EEG and MRI's come back normal even though you've had two or more seizures? Most importantly, do I have epilepsy???

I feel so lost and confused. My doctor wants me to start medication but I feel like if everything is "normal" why would I need to take any medication...

At this point I feel like I have absolutely no answers...I feel like it's almost better for it to come out abnormal and know what's wrong than for it to come back normal. I know I have been flooding this message board but I have found so much comfort from posting on here and hearing feedback from people going through the same thing
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Old 08-31-2011, 06:22 PM
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Do you feel like you had any seizure activity during the EEG? The EEG can only pick up seizures or abnormal brainwaves if they occur during the actual time where the test was taking place.

An MRI works by seeing if there any any abnormalities in the structure of the brain, for example lesions, scars, tumours, abnormal blood vessels.

My MRI came back normal but my EEG showed seizures which is how I got diagnosed. Don't be disheartened, perhaps another EEG will be scheduled for you if you continue to have seizures. Your neurologist must have thought it necessary to put you on medication just in case. Have you had a chance for a proper chat with him since you got your results?
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Old 08-31-2011, 06:24 PM
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The statistics vary, but a single awake EEG generates false negatives about 50% of the time. When the EEG comprises a combined awake and sleep set, approximately 20% are false negatives. So... a normal EEG doesn't rule out the diagnosis of epilepsy (and an abnormal EEG doesn't necessarily confirm one).

MRIs only indicate if there is an obvious structural cause for seizures (i.e. a lesion or vascular problem or tumor), but since the majority of seizure disorders can't be traced to a definitive cause, MRIs play a limited (though important) role. I definitely have epilepsy, but my MRI came out clean.

In the absence of clear test results, doctors will rely on clinical evidence (i.e. the actual seizures or symptoms) to make a diagnosis. Two or more seizures is the clinical standard for making an epilepsy diagnosis.

Your doctor can't force you to take medicine if you don't want to. If you do have a seizure disorder, it's important to get control one way or another, since untreated seizures can potentially progress. So when making the decision to medicate, you'll need to consider the risks/hassles of side effects against the risks/hassles of having more seizures.
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Old 08-31-2011, 10:37 PM
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I recently just had a EEG and MRI done. The EEG I had, was a video EEG where I was completely taken off all medications for 4 days. On the EEG it had seizures activity that said I def had epilepsy, but I wasnt having huge seizures. I ended up having simple partial seizures. My MRI came back normal though. Which it always has my whole life. I was born with epilepsy, and ever since having MRI's they have always come back normal. Its just the EEG's that are picking up the seizure activity. Im on Keppra XR for my seizures.
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Old 09-01-2011, 02:35 PM
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ambulatory (48-hour) eeg


hi there, i completely empathize with your frustration. i was diagnosed in my teens, and over the course of the past 15+ years have had 5 or 6 EEG's that came out "normal". not to mention a number of MRI's and even a PET scan. having just relocated from CA to TX, my new neurologist suggested a 48-hour study...i wore the electrode thingies home one afternoon, and returned to remove it all 2 days later. interestingly (but, as expected), the 45-minute study i did in the office the afternoon they connected me showed absolutely nothing abnormal. the 48-hour one, though, showed spiking and abnormal rhythms at night (which is when i have always had seizure episodes). i think someone else mentioned it above, but a sleep study (inpatient) or ambulatory study (at home) is worth considering. oh, as an aside, i have had only a few seizures in 15 years, currently only little "episodes" which wake me up at night, lasting 3-5 seconds. hang in there...it's frustrating, i know.
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Old 09-01-2011, 02:51 PM
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I am planning on asking her about a sleep study or what you suggested, the 48hr EEG because the two seizures I've had have only happened in my sleep and I don't remember them at all. Did they put you on medication? I took my first small dose this morning and haven't felt any side effects but I can tell there is medication in my body.
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Old 09-01-2011, 02:59 PM
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oh, yes--i've been on medication since i was first diagnosed. i've been on several different meds that were changed or discontinued or added-to. currently on lamictal xr (400 mg/day just increased to 600 mg/day yesterday), and have been on lamictal for 8-ish years now. the main reason they have me on lamictal is that i am hoping to start a family and my doctors have always felt most comfortable with this drug.
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Old 09-01-2011, 03:00 PM
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caraagrace,
Hey new friend, not to worry, those results are the majority. 70% of epilepsy patients have an unknown cause, and like nakamova said, it's standard to make the diagnosis after two seizures. Then the tests start and it's quite common for both eeg's and mri's to come out clear. It's the seizures that indicate the epilepsy, not the test results. It is 'gold' to a neurologist if you actually have a seizure during an eeg, though it's more likely that you won't. So if you can, be patient (yes, it sucks, but that's why we're here!), and hopefully at some point it will get figured out.
In the meantime medication is usually your best option (take time to educate yourself) to ward the seizures off. Anything else you need to know, just ask (((HUGS)))
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Old 09-02-2011, 02:58 PM
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I am 43, and my seizures started about a year and a half ago. I have had multiple MRI's, EEG's, a 4 day video EEG in which they saw multiple seizures, a Super DEEP MRI on some giant machine, and an MEG, all in the last year and half. Of course, now I'm broke and buried in medical bills. For my type of epilepsy, it is almost always caused by a benign tumor on the hypothalamus. My neurologist (who is awesome and is the director of the epilepsy research and clinic for Intermountain Healthcare) was almost positive that was the result, but everything came up negative. I am sure it was because they couldn't find a brain, which makes it difficult to find a tumor on said brain..

So we are back at square on, with no clue as to what is causing the seizures. So I am on a cocktail of meds and dealing with all the side effects, but at least the seizures are mostly under control.

I feel the same.. I wish they would find something abnormal so they could do something about it... but then again, I'm glad I don't have a brain tumor!
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Old 09-02-2011, 03:26 PM
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Hi Caraagrace,

I just to welcome you, and share with you that I had ,I don't know how many EEG w/ diff. Dr. - and nothing showed up. That was the case for 15 years. Then in 2005 then reason for my E. was found at teaching hosp.

I would hate to know what my seizures would be like if I waited until a test showed what was causing them.

Have E. is not a fun ride, but hang in there.

There are lot of people in this forum, (I think they are Nerug.) They know what they are talking about. I encourage you to go into the diff. forums and I hope you will find helpful information. I did.

I'm sure you know what works for one person, might not work for you. As bad as it is, it is trial and error thing for all of us.
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Old 09-03-2011, 09:26 PM
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Hi all

I am new here, after reading all the post's I realize I am in the exact same boat as everyone in this thread and it is not a great feeling. I have been living with seizues now for 4 years and I have had around 10 seizures. The doctor has me on 250 mg of topiramate and 1000 mg of keperra. All my MRI's and EGG's are clean. After last seizure I went to see my neurologist he said my EEG was clean, I am on the best medication for the types of seizures I am having (Grand Mals - all of them) just go to the emergency room next time it happens. That to me is saying there is nothing else he can do.

I am just wondering has anyone else had a similar experience?
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Old 09-04-2011, 07:21 AM
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Originally Posted by Bluesbrkr View Post:
I am 43, and my seizures started about a year and a half ago. I have had multiple MRI's, EEG's, a 4 day video EEG in which they saw multiple seizures, a Super DEEP MRI on some giant machine, and an MEG, all in the last year and half. Of course, now I'm broke and buried in medical bills. For my type of epilepsy, it is almost always caused by a benign tumor on the hypothalamus. My neurologist (who is awesome and is the director of the epilepsy research and clinic for Intermountain Healthcare) was almost positive that was the result, but everything came up negative. I am sure it was because they couldn't find a brain, which makes it difficult to find a tumor on said brain..

So we are back at square on, with no clue as to what is causing the seizures. So I am on a cocktail of meds and dealing with all the side effects, but at least the seizures are mostly under control.

I feel the same.. I wish they would find something abnormal so they could do something about it... but then again, I'm glad I don't have a brain tumor!
What's a super deep MRI test called?
Just curious as my EEGs have come up normal (apart from one but that only showed generalised slow wave activity) and my MRI scans were normal apart from scar tissue from previous surgery (a lump I was born with on my scalp which was removed aged 10), and sinus disease.
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Old 09-04-2011, 07:49 AM
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Sometimes as frustrating as this may be, there are just no answers.

I have had normal and abnormal eeg's. sleep deprived, the 48 hour one and a few cat scans.

Do I have epilepsy ? yes! DO i have to take meds? yes! will I ever understand why I have it? No and this is the most frustrating part of all.

doctors can do as many tests as they want but they will never be able to tell me with any satisfaction as to why I have it. They know how to treat it but just like someone with asthma, diabetes or other medical problems there is usually no reason that can be fully attributed for why.

It took me a long time to accept my disorder. I hope that your doctors can help you find the right meds if that is the route you are going to take. It is process because the meds that they put you on may not work. hang in there and know that each med will affect your body differently.

I slept for two days straight when they put me on primodone. anyhow good luck.
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Old 09-04-2011, 01:04 PM
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Gosh... on the topic of the expertise and qualifications of people in the forum: Almost everybody is just regular folks, not doctors. Some have a very curious mind so they dig out answers from reliable sources. Some have a scientific background and may be really good at explaining what they read. There may be a a doctor or neurologist in here because they or their loved ones have the same chance of getting epilepsy as everyone else does, so it makes sense that a neurologist or other doctor would be in here, too. But except for one (drarvindr), if they are in here then they all fly under the radar. We'd never know who they are.

So, when you read something in here take it as the words of an amateur. Not a doctor. Most people in here try to cite an article or other reference when they talk about anything scientific/medical, so others can see the information for themselves and decide what they think. So I encourage you to check out and learn more about everything that's posted.

Different topic... MRIs.

Originally Posted by davidmc View Post:
What's a super deep MRI test called?
Just curious as my EEGs have come up normal (apart from one but that only showed generalised slow wave activity) and my MRI scans were normal apart from scar tissue from previous surgery (a lump I was born with on my scalp which was removed aged 10), and sinus disease.
It might be possible that we're talking about a higher resolution MRI. Different MRI's have a different quality of resolution due to the method or the basic science involved. The newest one, higher resolution because it allows the machine to show differences in sodium instead of water.

http://www.sciencedaily.com/releases...1204163237.htm

Each of the different MRI methods are better at detecting different types of things in the body (like plaque in the brain vs. blood flow). Many were recently developed, so the technology keeps on getting better. Here's more information on how MRI's work:

http://medical-dictionary.thefreedic...onance+imaging

http://en.wikipedia.org/wiki/Magnetic_resonance_imaging

We could also be talking about an Epilepsy Protocol MRI, which takes thinner slices so smaller abnormalities could be seen. Put on your science hats:

Quote :
Conventional MRI is inadequate for patients with epilepsy, since many of the findings are subtle and easily missed. Routine MRI consists of a short scan time, 3- to 5-mm thick slices with an interslice gap of 2-3 mm. These studies do not include spoiled gradient recalled (SPGR) or magnetization prepared rapid gradient echo (MPRAGE), T1-weighted images that enhance gray/white matter differentiation, which is crucial to the analysis of cortical architecture.

These images are also not acquired in a coronal oblique plane perpendicular to the long axis of the hippocampus, which is particularly important when evaluating temporal lobe epilepsy (temporal lobe epilepsy).

Epilepsy protocol MRI at 1.5T or 3.0T, on the other hand, includes the entire brain from nasion to inion, T1-weighted MPRAGE or SPGR images 1.5-mm slice thickness with no intervening gap obtained in the coronal oblique plane (if temporal lobe epilepsy is suspected). These images are acquired as a 3-dimensional (3D) volume, thereby allowing postprocessing to correct for head misalignment and for reformatting images into multiple planes to confirm a subtle MCD.

An epilepsy protocol MRI also includes coronal and axial fluid-attenuated inversion recovery (FLAIR) sequences with a 2- to 3-mm slice thickness and a 0- to 1-mm interslice gap. A conventional thin-slice (3-mm), T2-weighted, axial and coronal sequence is also obtained...

Benefits of epilepsy protocol MRI
Unfortunately, in most clinical practice settings, a nonepilepsy protocol MRI is performed. While a routine MRI excludes ominous structural substrates that require urgent treatment, such as high-grade gliomas and arteriovenous malformations, subtle structural substrates, such as hippocampal sclerosis and malformations of cortical development (MCDs), are missed. Identification of these substrates has long-term therapeutic and prognostic implications for remission versus intractability.
http://emedicine.medscape.com/articl...view#aw2aab6b3


Wahooo for modern science!

Last edited by Endless; 09-04-2011 at 01:08 PM.
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Old 09-04-2011, 03:23 PM
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Well, if


it makes you feel any better, I have had normal EEGs for about 40 years. And then, right about the time I turned 40, my EEGs started to show things. YIppee skippy. :S

Did I have E in the meantime? OOOOHHHHH YESSSS! Do I now have 4 types of E? You bet your bottom dollar that I do!

Have I had normal MRIs........well, that's debatable. Me, being normal...........HA.

I have a pineal cyst inside my brain, and that was discovered when my neurologist was trying to figure me out. So, I guess my MRIs have not been normal per se, but in regards to E, they are. There is no structural damage that is the cause of me E. Just the stupid cyst.

Don't stress. It IS normal to be put on after 2 seizures. And as for having your seizures in your sleep......I have them then as well. That's the only time that I have them. It's a pain, too, because I only know that I've had one (tonic clonic in particular) if I've done some sort of damage to myself. The other kinds I sort of know, but its harder to figure out sometimes.

We're here with you, so feel free to holler whenever you need the help!

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Old 09-04-2011, 05:03 PM
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Five years ago I had my first seizure. Grand mal. I woke up in the back of my dad's SUV en route to the hospital. When I arrived at the hospital I argued with the nurse attempting to set up an IV, (I had a fear of needles from when I was a child, that fear is long since gone). I had an MRI, a CT, and an EEG. I have had more than one of each and they have all come back normal. However, when I stubbornly quit taking the anti-epileptic drugs I was prescribed, I had another grand mal, which landed me in a ER after I woke up covered in blood and being put on a stretcher.

Bottom line is this: I was thinking along the same lines, that my scans and tests came back normal, so it must have been a freak occurrence especially since the docs thought it might be related to chemical stimulants. I wish I would have just taken the meds from day one. It would have been easier on me in general. I thought there was no way it would ever happen again, especially since it happened in my sleep. But I was wrong, and the docs knew much better than I did what I should have been doing.


Listen to your docs, take your meds, and let the docs and the meds do their job and get you better.
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Old 09-05-2011, 08:21 AM
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Originally Posted by skeeter1271 View Post:
Sometimes as frustrating as this may be, there are just no answers.

I have had normal and abnormal eeg's. sleep deprived, the 48 hour one and a few cat scans.

Do I have epilepsy ? yes! DO i have to take meds? yes! will I ever understand why I have it? No and this is the most frustrating part of all.

doctors can do as many tests as they want but they will never be able to tell me with any satisfaction as to why I have it. They know how to treat it but just like someone with asthma, diabetes or other medical problems there is usually no reason that can be fully attributed for why.

It took me a long time to accept my disorder. I hope that your doctors can help you find the right meds if that is the route you are going to take. It is process because the meds that they put you on may not work. hang in there and know that each med will affect your body differently.

I slept for two days straight when they put me on primodone. anyhow good luck.
The problem is because of the normal test results, the neurologists wouldn't let me try any meds. My seizures are simple partial seizures but they were happy to let me continue managing them completely uncontrolled (despite the fact I wasn't "managing" and was getting an increase in the seizures. I sat up all night one night on the internet searching for a solution as the neurologists weren't helping, and I wasn't getting much sleep anyway, so may as well do something productive instead of trying and failing to get to sleep.

At first I found herbal remedies but was sceptical of them and to be honest just wanted "proper" anti-seizure medication. I didn't have enough left over in my bank account that night for epileptologist-Still or whatever it was called anyway. So I carried on searching.
As per usual, I had a bad headache, and eventually after several hours, I searched headaches and seizures and that's how I found out about Topamax.
The only reason I am on Topamax now is because I have headaches, if it wasn't for that, I still wouldn't be allowed any anti-seizure medication.

Heart, thyroid and diabetes problems have been ruled out. How do you get a diagnosis in the case of simple partial seizures with normal test results?
My neurologists (and I have seen a lot) will not give me any diagnosis with normal test results.


Originally Posted by Endless View Post:
Gosh... on the topic of the expertise and qualifications of people in the forum: Almost everybody is just regular folks, not doctors. Some have a very curious mind so they dig out answers from reliable sources. Some have a scientific background and may be really good at explaining what they read. There may be a a doctor or neurologist in here because they or their loved ones have the same chance of getting epilepsy as everyone else does, so it makes sense that a neurologist or other doctor would be in here, too. But except for one (drarvindr), if they are in here then they all fly under the radar. We'd never know who they are.

So, when you read something in here take it as the words of an amateur. Not a doctor. Most people in here try to cite an article or other reference when they talk about anything scientific/medical, so others can see the information for themselves and decide what they think. So I encourage you to check out and learn more about everything that's posted.

Different topic... MRIs.



It might be possible that we're talking about a higher resolution MRI. Different MRI's have a different quality of resolution due to the method or the basic science involved. The newest one, higher resolution because it allows the machine to show differences in sodium instead of water.

http://www.sciencedaily.com/releases...1204163237.htm

Each of the different MRI methods are better at detecting different types of things in the body (like plaque in the brain vs. blood flow). Many were recently developed, so the technology keeps on getting better. Here's more information on how MRI's work:

http://medical-dictionary.thefreedic...onance+imaging

http://en.wikipedia.org/wiki/Magnetic_resonance_imaging

We could also be talking about an Epilepsy Protocol MRI, which takes thinner slices so smaller abnormalities could be seen. Put on your science hats:



http://emedicine.medscape.com/articl...view#aw2aab6b3


Wahooo for modern science!
Thanks. Will have a read.
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Old 09-05-2011, 02:32 PM
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David,

See if your neurologist will refer you to an epileptologist (seizure specialist) for a second opinion. There aren't many doctors who will refuse to refer for a second opinion.

Another possibility is to bring information to your neurologist. If the information is basic (epilepsy 101) and the neurologist didn't know the info in the first place, this has a chance of pissing them off. But, here it is:

http://www.epilepsy.com/epilepsy/eeg_normal

If all else fails, find yet another general neurologist who can look at your data. Maybe start the conversation with "I read on epilepsy.com that 50% of the EEGs come out normal, even for people that have Epilepsy. How do you reach a diagnosis of epilepsy?" (Some sources say 30%, not 50%) Bring the article as back-up.

Is the topamax working? Are you able to tolerate it?

Don't give up.




Originally Posted by davidmc View Post:
The problem is because of the normal test results, the neurologists wouldn't let me try any meds. My seizures are simple partial seizures but they were happy to let me continue managing them completely uncontrolled (despite the fact I wasn't "managing" and was getting an increase in the seizures. I sat up all night one night on the internet searching for a solution as the neurologists weren't helping, and I wasn't getting much sleep anyway, so may as well do something productive instead of trying and failing to get to sleep.

At first I found herbal remedies but was sceptical of them and to be honest just wanted "proper" anti-seizure medication. I didn't have enough left over in my bank account that night for epileptologist-Still or whatever it was called anyway. So I carried on searching.
As per usual, I had a bad headache, and eventually after several hours, I searched headaches and seizures and that's how I found out about Topamax.
The only reason I am on Topamax now is because I have headaches, if it wasn't for that, I still wouldn't be allowed any anti-seizure medication.

Heart, thyroid and diabetes problems have been ruled out. How do you get a diagnosis in the case of simple partial seizures with normal test results?
My neurologists (and I have seen a lot) will not give me any diagnosis with normal test results.




Thanks. Will have a read.
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Old 09-06-2011, 04:40 PM
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Many times, MRIs and EEGs are normal for people with Epilepsy. Many of mine are normal and for sure my MRI is normal. Several of my EEGs show spike and wave as well as driving responce but ive never had a seizure during an EEG. And not all my EEGs have those abnormal findings and for the most part and my dr writes that it is normal. But its normal for someone with seizures but abnormal for someone who has no seizures going on or anything. I wouldnt worry too much right now about it only because MRIs show damage and other physical issues in the brain that might be causing it, and the EEG shows all the abnormal activity in the brain and it doesn't always show things. Many of us on here have had normal EEGs and MRIs. Some types of seizures like complex partials dont show up and may even be too deep for the electrodes on the surface of the skull to pick up. But there are more in depth EEGs out there too.
They want to try medication for you because the symptoms you share might be mediated with a medication. Also it can also help in finding the medical condition such as Epilepsy if they find the meication is working. BUT, not all medications work for everyone. It might take a few tries on meds or adding meds together like in my case, before the symptoms change some. Also there are more tests and exams, more things to consider too as they try and diagnose you. Sometimes it takes a while.

I really hope things go well and you feel better. Write on here as much as you want. We are all here for you and others.
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Old 09-07-2011, 04:26 PM
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Originally Posted by davidmc View Post:
What's a super deep MRI test called?
Just curious as my EEGs have come up normal (apart from one but that only showed generalised slow wave activity) and my MRI scans were normal apart from scar tissue from previous surgery (a lump I was born with on my scalp which was removed aged 10), and sinus disease.
Well, I'm not exactly sure. I know I had to go to a different hospital because the machine was only in a few places. I believe it primarily had to do with the strength of the magnet. most machines use a 1.5T (tesla) magnet and this is the standard MRI. Higher res machines use a 3.0T magnet. Apparently, there are also 7.0T machines which are very rare and usually used for research. I probably was in a 3.0T machine. All I know is that the machine was huge! at least double the size of a standard MRI machine.

Next time I talk to my neurologist, I'll ask more specifics and and let you know.
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