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May 16
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A MyEpilepsyTeam Member

If you mean that by Neurologist then I don't really know. I have always put it down to there interested in the treating side of things but the major issue you then get there isn't really any a in between to give you the details of what's going on. I did have a ESN (epilepsy specialist nurse) for a few months after I had a TC seizure afew years ago and then needed all this testing and needed to change meds.

May 16
A MyEpilepsyTeam Member

Ellen Slattery Edwards, my my adult neologists was amazing Dr William Brewster Smith! He was from a different era, graduated in 1972. He didn't care about regular scheduling like they do today, and would take his time with me until I felt comfortable, even though I didn't know he was special at the time, because my epilepsy that I was born with in 1971 wasn't diagnosed until 2003.

Since Brewster Smith last appointment in 2007 after brain surgery to remove a slow growing brain tumor (ganglioglioma) I have seen at least 10 different epilepsy neologists and never had the same one on one relationship. The fact that I've been disabled 19 years and see a migraine neologist who's also amazing, I can tell you from many years of research and experience you're not alone in feeling this way.

Unfortunately with today's reality and scheduling, most neologists aren't able to be as amazing as Brewster Smith was with me, and it's just the way things are. I've become my own personal specialist and use my doctors as extension to the medical system. I have tried to find another epileptic neologists that's truly amazing for others that I feel comfortable referring them too, but haven't been able to find that person.

I'm so sorry you've felt this way, and only hope one day you'll meet that special person.

Brewster retired as a professor, so I only can hope he passed on his kindness onto his student, as he invited myself and other pasted patients to a few of his lectures over the final years.

Much kindness and love

May 16
A MyEpilepsyTeam Member

Doctors have different attitudes. Growing up I saw neurologists at St. Louis Children's Hospital and they were serious and very helpful.

When I became too old to see them, I saw a neurologist next door and he was no help at all. We just met, talked briefly about how I was feeling and scheduled another appointment six months later.

I started seeing a neurologist closer to home who communicated better but didn't have many answers to the questions I asked.

Then a co-worker gave me an article on an epileptologist. He started by scheduling four different tests for me to get an idea of what was wrong and what was best to help. He made it easy to talk about everything and made it clear what I needed to do. We had one or two different opinions but we worked things out.

It took a few months but I finally got him to agree that I needed surgery. He felt I had control of my seizures so I reported every little feeling and he finally set me up for testing then the surgery. He gave me help I wasn't expecting. He gave me the odds of getting better control of seizures or total control on or off meds.

It just goes to show the best doctor is out there. You just have to keep looking.

May 16
MyEpilepsyTeam

That frustration is completely valid, and you're definitely not alone in feeling this way. Many people with epilepsy feel like their appointments are too brief or that doctors don't go deep enough into what's really going on.

One thing that can help shift the dynamic is coming prepared with specific questions. It puts you in Show Full Answer

That frustration is completely valid, and you're definitely not alone in feeling this way. Many people with epilepsy feel like their appointments are too brief or that doctors don't go deep enough into what's really going on.

One thing that can help shift the dynamic is coming prepared with specific questions. It puts you in the driver's seat and makes it harder for the appointment to just breeze by.

Here are some questions worth bringing up:

- What is the underlying cause of my seizures?
- How can I best track and record my seizure activity?
- Who else should be on my care team (e.g., neurologist, epileptologist)?
- Does my health history affect my treatment options?
- What should my family know to help keep me safe? After 62 years, you've earned the right to a thorough conversation! If a doctor consistently isn't engaging with your concerns, it may also be worth considering a second opinion or asking for a referral to an epileptologist — a specialist who focuses specifically on epilepsy.

You deserve answers, not just nods.

May 16

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