Epilepsy Talk

MS or Epilepsy? | January 20, 2012

Recently a woman wrote to me telling about the awful diagnostic disaster that she had been through.

In her words: “It took 3 years, 3 primary doctors, and 7 neurologists to diagnose me.

I told everyone that ‘it feels like my brain is shaking in my head.’

If they had listened to me the first time and had done a simple EEG, it would’ve saved us and the insurance company a lot of money!

I was misdiagnosed with MS after 4 MRIs. We had 3 trips to the ER. A lot of blood work. And on and on…”

She was helpless and they were hopeless.

If anything, they had it the wrong way around!

According to Mayo Clinic: “Currently there isn’t general acceptance of seizures as the first and only sign of MS.”

Common sense would have called for at least an EEG or Video EEG Monitoring. (Video EEG Monitoring tells you whether unusual activity in the brain is the result of an epileptic seizure…the type of seizure and…the region of the brain from which the seizures arise.)

Yes, it’s true, 2% to 3% of people with multiple sclerosis are more prone to seizures and epilepsy than the general population. But they tend to be mild and very few don’t respond to medication.

So, I guess the confusion here is that seizures can arise as a possible consequence of MS but MS does NOT indicate epilepsy.

No wonder the mistaken diagnosis.

Epilepsy is a condition with many possible causes. Anything that disturbs the normal pattern of neuron activity — from illness to brain damage to abnormal brain development — can lead to seizures.

It can be an abnormality in brain wiring, an imbalance of nerve signaling chemicals (neurotransmitters), or some combination of these factors. Having a seizure doesn’t necessarily mean that a person has epilepsy. Only when a person has had two or more seizures is he or she considered to have epilepsy. EEGs and brain scans are common diagnostic tests for epilepsy.

Multiple Sclerosis is a more unpredictable disorder because it can range from relatively benign…to disabling…and devastating, as communication between the brain and other parts of the body is disrupted.

And many consider MS an autoimmune disease – where the body’s immune system launches a defensive attack against its own tissues. In the case of MS, it’s the nerve-insulating myelin that comes under assault. These attacks may be linked to an unknown environmental trigger, maybe even a virus. All of which make it even more difficult to diagnose and treat.

Advances in neuroimaging methods would be helpful in clarifying the distinction between the two. But believe it or not, research on this issue has been pretty sparse.

So, as it stands now, it looks like neuroscience still has a long way to go until the diagnosis goes from guessing games — to irrefutable fact.







  1. I had somewhat the same problem when I first started seeing my epileptologist. I had an MRI done and he saw what he felt was white matter around the brain. He told me this could be MS and I had one of two choices: Just let it go for now or have a spinal tap done so I’d know for sure.

    I didn’t want to battle with epilepsy, later defeat it only to find out MS was my next battle so I had the spinal tap. The results showed no sign of MS so you could say I’ve defeated every handicap that tried to take over my life. No matter what made up my life story, this is how I wanted it to end.


    Comment by Ed Lugge — February 13, 2012 @ 11:32 PM

  2. Oh Ed, I’m so glad you had the spinal tap. Were you afraid (of either the tap or the outcome?) When I saw the size of that needle, I freaked out!

    I’m so very glad you ruled out MS and don’t have to have THAT cloud hanging over you!


    Comment by Phylis Feiner Johnson — February 14, 2012 @ 12:30 AM

  3. I was more afraid of the outcome. Between the old way of doing eeg’s and having blood tests done, I was used to needles.


    Comment by Ed Lugge — February 14, 2012 @ 4:44 PM

  4. I’ve gotta say, I’ll never get used to needles.

    The best I can do is look away. Which I guess is easy when you’re having a spinal.

    But first, you can’t help but see that monster needle!


    Comment by Phylis Feiner Johnson — February 14, 2012 @ 8:41 PM

  5. I was told by my mom it’s all in your head. I have friends who never had a history of epilespy get a seizure out of the blue.


    Comment by michele metzger — July 9, 2016 @ 11:06 AM

  6. Yes, people do get seizures at different times in their lives. But it’s not because they want to.


    Comment by Phylis Feiner Johnson — July 9, 2016 @ 4:18 PM

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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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