Roles of seeing an epileptologist and lifestyle changes for epilepsy

Posted by royanthony @royanthony, Jul 13 1:28pm

Is it common for a person with epilepsy to only work with an epileptogist and not a typical Neurologist? My neuro is retiring so I'm considering only seeing an epileptogist. Any experience with this?

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@santosha

Good Morning @royanthony
How nice to hear that your current neurologist has been such a blessing throughout your epilepsy journey in the past 16 years. Having that kind of consistent, trusted care over so many years is truly invaluable. I hope he helps you find a substitute that will also be a blessing to you 🙏.
I'm curious to know: Is he a neurologist with a specialization in epilepsy, or does he have a broader neurology practice?

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I'd consider him one that specializes in epilpsy. I was refered to him by my GP, who by the way has been my GP for 16 years. I'm sure he'll be retiring soon. I'm spoiled by the relationship with these doctors. Their interest in you personally, I'm sure will be hard to replace.

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@royanthony

I'd consider him one that specializes in epilpsy. I was refered to him by my GP, who by the way has been my GP for 16 years. I'm sure he'll be retiring soon. I'm spoiled by the relationship with these doctors. Their interest in you personally, I'm sure will be hard to replace.

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Thanks @royanthony !
This confirms my feeling and personal experience so far that neurologists with specialization in epilepsy or epileptologists can make a lot of difference in our epilepsy journey.
You've been truly blessed with both your GP and neurologist - I'm so happy for you! 😊 Experienced doctors like yours usually have excellent networks and can guide you toward colleagues who share their patient-centered approach to care. Try not to worry too much about finding a replacement.
My family had a wonderful GP in the past, but sadly he passed away while I was still a teenager, and we never quite found an adequate replacement. GPs here in Brazil have become rare, which sometimes drives me crazy - constantly going from one specialist to another without that central coordination.
@jakedduck1, you've had such a long journey with epilepsy, and I understand you've been treated by various doctors over the decades. From your experience, have you noticed a significant difference in treatment quality and care when working with a neurologist with specialization in epilepsy or an epileptologist versus general neurologists?
I'd love to hear from other members what their experiences have been in this regard.
Chris

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@santosha
Good evening Chris,
I saw three Neurosurgeons that I liked and also have seen an epileptologist and many general neurologists. I think it's really the luck of the draw. I believe that different doctors have different ideas, knowledge and abilities. Specialists, in my opinion are not always the most skilled. The Neurologist that stopped, my seizures after 45 years was a general neurologist. unfortunately, he passed away a couple years ago. Of all the people I've seen over the all too many years, he seemed the most knowledgeable and considered my points of view unlike the epileptologist at Stanford University who had a defeatist and negative attitude. He also thought he was a clairvoyant. He said I’d have frequent seizures until I died. Now my new primary care doctor is taking care of my seizure medicines. He just arranged refills for 1 year. My last primary care doctor often didn't refill my medicine on time.
Epileptologists should be the most knowledgable, and I believe they usually are. but being an apple apologist, does it automatically qualify you as the most highly qualified?
Take care,
Jake

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