Changing neuros, I do too much for this one

[valeriedl]

My neuro is, or should I say was, really good. He'd sit and talk with me about things going on and number of seizures and so on...

I keep a very detailed seizure diary keeping track of seizures and also any other major things that have gone on too - surgerys, major testing and that sorts. I type it out, giving him a copy too, and we would spend time at it during the office visit looking at it and going over seizures and talking about them. I do this so we don't have to spend the whole office visit saying "I had a seizure on the 5th of the month, I think it was, oh no I think it was the 10th. I'm pretty sure it was a partial, I don't know how log it lasted" and so on...

I had my first seizure in 2003. For at least 14 years we would spend the time reading it and going over things. Over the last 5 years he started going over it shorter and shorter, decreased to the point now when I give him the papers he scans them over, sets them on his desk, checks my VNS and maybe a few other things, not much though. I think I'd be better at my next appt not giving him any type of diary.

I'm looking for another neuro now. This isn't to easy because of my VNS, not many deal with them. I did find one who looks good, just hoping he takes my insurance. I'm going on a huge vacation at the end of the month so I'll call him after that.

Hope everything works out and I won't do to much for him.

 

[Nakamova]

Your neuro may be under pressure to keep your office visits short. These days most doctors are asked to squeeze in as many patients as possible, and don't even have time to add patient-supplied info to the electronic record..... If you find a new neuro ask him or her how long they will meet with you at each appointment, whether they can be reached via email, and if they have a record-keeping system that allows for entering the detailed seizure diary information that you provide.

 

[valeriedl]

I am able to get a hold of my neuro by email, and he's good at getting back to me quickly. The only thing about email is that you can't have an actual conversation to talk about things and it can be hard to describe them.

The other reason I want to find a different neuro is because my current one doesn't really want to make changes with things. He will adjust the settings on my VNS but he hasn't wanted to do anything with my meds. I think when I told him that I'd wet the bed, and I told him that by email, was the first time in a few years that he's asked if I wanted to do anything with my meds, which was his answer sent to me in an email.

I think it's just time for a change too.

 

[Topcat]

Some of my doctors wanted me to keep a diary but only one looked at it, then she complained that she couldn't copy it because it was in a small notebook. I used to carry that because it was with me and I didn't need to remember when I had them (I was having a lot then). She wanted to make copies so that wouldn't work. So I started doing it the way she wanted but then she didn't seem interested in the list. At least this neurologist
doesn't have me doing that.

 

[denverboz]

So did you share your feelings about all this with your neurologist?

 

[CQ:)]

At the epilepsy clinic I go to they got all the information they needed about my seizures when they returned again after the surgery. So now all the neuro likes to know is how many seizures I have each month, unless there has been a change.
If there is a change I note it down and discuss it with him at our next appointment.
My neuro is really nice, he'll answer any question I have and not get frustrated even if i'm overthinking something which 1/2 the time I am.

 

[valeriedl]

Some of my doctors wanted me to keep a diary but only one looked at it, then she complained that she couldn't copy it because it was in a small notebook. I used to carry that because it was with me and I didn't need to remember when I had them (I was having a lot then). She wanted to make copies so that wouldn't work. So I started doing it the way she wanted but then she didn't seem interested in the list. At least this neurologist
doesn't have me doing that.

I keep a little calendar with me in my purse so that if I have a seizure I can write down all the information that I know about it. If I wait to write the info about it later I'll forget most of it. The reason that I type it out for him is that it's hard to read, even for me, mostly scribbled words. He could have probably read it though because it looked like dr scribble - lol