article about delayed diagnosis

[Nakamova]

Article at the link below appeared in today's Washington Post. It's a familiar story to many here at CWE: A woman who suffered for years because her symptoms were misdiagnosed as an "anxiety disorder". It took her having a tonic-clonic before she was finally diagnosed with temporal lobe epilepsy. Her EEG was negative, but she was diagnosed by a skilled epileptologist who could recognize her symptoms.

It's not unusual for laypeople to be unfamiliar with the symptoms of partial seizures, but it's criminal that her doctors never even considered an epilepsy diagnosis (and she had a family history of TLE!). The good news is that, once diagnosed, her seizures responded right away to the AED she was prescribed. But that doesn't negate all those years of suffering...

https://www.washingtonpost.com/nati...8604ed88993_story.html?utm_term=.d8e69b7e759d

 

[RanMan]

Very interesting reading.

In the 1970s, Not much was known about Ep.
In 1973, my sister how a grand mal seizure at school at 13 years of age.
It was when she had her first menstrual cycle ( which was prob. the trigger).

Her family Doctor at the time prescribed tons of Dilantin and tegritol without doing any tests or scans of any kind. As a result, she overdosed causing severe brain damage?.

 

[BIGMAN131307]

It's not unusual for laypeople to be unfamiliar with the symptoms of partial seizures, but it's criminal that her doctors never even considered an epilepsy diagnosis (and she had a family history of TLE!). The good news is that, once diagnosed, her seizures responded right away to the AED she was prescribed. But that doesn't negate all those years of suffering...

Doctors and nurses need more training to spot seizures and seizure activity.

All through JR/SR High school I had "episodes" where I felt sick. They wouldn't last long, typically less than five minutes. During those "episodes" I would loose awareness of my surroundings. I was seeing a neurologist, but wasn't given a proper diagnosis. I had several different neurologists. Eventually one told me I was just having bad headaches, and took me off medications. A few months later I had two tonic clonic seizures and was put back on AEDs again. It was determined I suffered from CPS. Without AEDs I would have tonic clonic seizures. Fast forward 18 years including RTLS finds me here. I still take AED for preventative measure, and no seizures since my surgery.

 

[Bernard]

TLE seems to be very difficult to diagnose.

https://www.coping-with-epilepsy.co...ex-partial-nead-nes-pnes-including-ptsd-1680/