Epilepsy Talk

MS or Epilepsy? | January 19, 2023

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!”

Another lady wrote:

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. In both cases of having Epilepsy or MS, every doctor would be able to see a BIG difference in results of any treatment where drugs are the 1st answer to try, & using the BRAND NAME DRUGS will have a lot better results instead of the cheaper & useless generic name drugs. I am not saying that all people with MS & EPILEPSY must or should use BRAND NAME drugs, but when the results can be worth the cost of trying them, maybe everyone will be better for BRAND NAME drugs to start with, OR they will know the differences when they want to save their money & use cheaper & useless generic drugs, that DO HAVE MORE TOXINS & CHEMICALS IN THEM, which WILL not maybe make your condition worse. After 41 years of playing their games with drugs, when they all say THERE IS NO DIFFERENCE between generic & brand name drugs, to that I say THE BRAIN NEVER LIES, when you feel the worse from generic names & the BETTER FROM BRAND NAMES, and it is not just my imagination, when you have LESS seizures from brand names compared to MORE SEIZURES with generic names. What needs to be reported are DO LEFT SIDE or RIGHT SIDE effects of all BRAND & GENERIC names for Epilepsy, needs to be considered 1st, if all these drugs are to have no difference in how they work, which IS a number 1 lie from CDC, FDA & DOCTORS, as ALUMINUM & other toxic chemicals YOU WILL FINED MORE OF in any GENERIC NAME drugs from a simple OTC drug, to any prescribed drug you need filled. BUT there ARE some low MG AED’s that are BRAND NAMES will have the same toxins & chemicals you’ll find in all generic name drugs. 2 of them are VIMPAT & XCOPRI which I have learned that ONLY the 50MG tablets of XCOPRI & 100MG tablets of VIMPAT are the safest to take. How I know that is because MY BRAIN DOES NOT LIE, and yours wont either when you DECIDE & tell your doctor what BRAND names of AED’s you would like to try, I will say how with KEPPRA it did not matter much as I took a COMPOUNDED FORM of the drug & I still was like a zombie to suicidal & I have a RIGHT SIDE weakness of my brain, where I have talked to people over the years with LEFT SIDE weaker brains where KEPPRA seems to help them better. So again THE BRAIN NEVER LIES, ”when” you know what it is talking back at you & is saying LOUD & CLEARLY. Most people like me, tells me that is God guiding you, which I say WHATEVER or WHOEVER I know when something is GOOD or BAD for my brain, and the PEACE from only what God can give did come & will come for anyone else IF you ask God in ”’humility”’ for HELP !!!.

    Liked by 1 person

    Comment by James D — January 19, 2023 @ 3:14 PM

  2. A message to we over-protected epileptics: Be sure someone you trust is with you in the ambulance as well as all areas of the hospital if brought in through ER or anywhere else having seizure-related problems. People aren’t as nice as we think they are.

    Liked by 1 person

    Comment by Susan Vander Veer — January 20, 2023 @ 12:34 AM

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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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