Unfortunately, the misdiagnosis of epilepsy is fairly commonplace and it can have a significant impact on the person who has received the misdiagnosis. Epilepsy misdiagnosis continues to be a huge problem, as it’s estimated by the World Health Organisation (WHO) that up to 70% of people living with epilepsy could be seizure-free, but only if they’re correctly diagnosed and treated.
A study showed that as many as 90,000 people were misdiagnosed with epilepsy, which is as many as 1 in 4 cases. It’s not surprising that misdiagnosis is common with epilepsy as, in some cases, it can be notoriously difficult to diagnose and there are a number of other medical conditions that can appear very similar.
Three of the most common ways that epilepsy is misdiagnosed are through first seizures, febrile seizures and NESD. The presence of a seizure may point towards epilepsy, but a seizure doesn’t strictly mean there should be a diagnosis of epilepsy.
A first seizure is a one time event that doesn’t usually recur. First time seizures can be triggered by a variety of things, such as drugs, alcohol or anaesthesia. A first time seizure can happen without any trigger, however, in the vast majority of instances will not occur again unless the person has experienced some form of brain injury or has a family history of epilepsy.
Febrile seizures occur in children who are usually under 5 years of age and have a high fever. Febrile seizures rarely develop into epilepsy and the chances of having another seizure are between 25% to 30%.
NESD events look like seizures, but are actually symptoms caused by other conditions that mimic the symptoms of an epilpetic seizure. Distinguishing between seizures and NESD events can be incredibly difficult, which is why many people are misdiagnosed with epilepsy when they, in fact, have a different condition altogether.
There are a variety of conditions that can present with similar symptoms to epilepsy and are often misdiagnosed as epilepsy (or are misdiagnosed in place of epilepsy).
Of course, as is always the case in the medical profession, misdiagnosis carries a significant risk for the patient. The primary risk is that the person does not receive the correct treatment and makes no progress. For example, if a person is misdiagnosed with epilepsy they are likely to be prescribed anti-seizure medication (AEDs) that will be ineffective and leave the underlying issue untreated.
The severity of the consequences of misdiagnosis can cause unnecessary discomfort and pain, and in some cases can even be fatal.