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.