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CallMeSam

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To go to an actual neurologist and not just a normal doctor?
After the fiasco with my Neurologist refusing to refill my medication -- or even see me at all! -- I stopped going to him. I have my prescription filled through my RN that I've seen since I was 5, I still get blood tests every few months to check my levels, my seizures are under control as long as I stay on the medication.

In fact the only time I've had seizures since I was diagnosed was when the neurologist took me off of the meds briefly as I hadn't had a seizure in two years, and it was to "See if I was okay without them". Yeah, within two weeks of being off of them I had 4 grand-mal seizures in 10 hours...but that's another story.

I thought I was okay, but when asked what neurologist I went to by a relative I replied "I don't" and you would have thought I had said something horrible by the way she reacted.

In my case, how important do you think it is from your experiences to go to a specialist and not just a normal doctor?
 
Personally I've gone without a neurologist for a while but my seizures were OK at the time & I had no need.

The problem is that if anything regarding your seizures needs to be addressed, it is best to have someone who specializes in seizures, or at least in the neural part of the body to take care of that situation. As well they're going to be more familiar with the AED's, which are most appropriate for you and their possible side-effects.

I would suggest getting a neurologist now, even if it's just so that when/if something does go wrong you've got someone familiar with the situation of your seizures.

I have to admit it can be hard finding a good one but I do feel it is a necessity.
 
Hi Sam --

I've wondered about the same thing, since my seizures have been controlled for a while now by meds. Can your regular doctor refer you to a neurologist? You could meet once with him or her just so they have some background on you, but then continue getting your Rx through your RN. That way, if you do have some breakthrough seizures you'll know who to contact, and it won't take as long to get them up-to-speed.
 
Hello...

I agree with needing to see a neuro. It does take a LONG time to get in to see one the first time. They won't see you on a same-day emergency basis. But once you are alread a patient, they will. If you wait until you have an emergency it will be too late. It's a good idea to find someone now.
 
You can probably imagine what it would be like needing a US neuro available on short notive while living overseas, lol. I made sure to have one though. Saw a neuro one time in MO before going back to Kuwait and explained my situation. He said any time I needed to see him just call his office and let them know I was on my way back to the States so they could set me up.

Please make sure you have a neuro. I've been faced with more than one PCP and/or specialist who just didn't know how to handle my neurological issues properly...neuros make it their business to do so. Yes, it takes some time to find a good one but that is a positive really...you CAN find a good one. You don't have to stay with someone you don't like :) My neuro was more than willing to refer me to someone else if i wasn't comfortable with her...heck, I even threatened to fire her one day and she was fine with that!
 
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