Seeing a new nero tomorrow

[valeriedl]

I'm going to see a new neuro tomorrow. I met him at a conference and I really liked him.

My current neuro doesn't seem to want to try to make any changes to things. I was going crazy on Keppra and It took me forever to get him to get off of it and take something else. I finally did and I'm taking Xcopri now. I'm still having seizures but not as many and they aren't as bad. Another thing with my current neruo is that I only get to see him once a year, all the other visits are with his nurse practitioner or someone else. I have a heck of a time getting ahold of him when I need anything. I took my meds twice and called his office because I didn't know what to do. I never got a call back so I ended up going to the ER. Luckily I didn't have any problems.

This being not really medically related but one thing that impressed me about him is that he wrote my name and phone number down on a piece of scrap paper he found, stuck it in his pocket and told me that he'd have his office call to schedule an appointment. Well believe it or not they did just a few days later, before I even got a chance to call him. Maybe this dr will be good at returning calls fast.

I'm not leaving my current neuro yet but I'm hoping the one I'm seeing tomorrow I'll really like.

 

[Porkette]

Hi Val,

I wish you the best of luck with your new neuro just be sure that if you are taking any controlled seizure meds that they
don't tell you that you have to come in for a visit twice a yr. like they told me. I wish you the best of luck and I hope
all goes really well for you. God Bless You!

Sue

 

[valeriedl]

This new neuro is great, much better than my current one, so I'm switching. He has a wonderful bedside manner. He did a great job of explaining what type of seizures I'm having to my parents and I and changes medicinally and surgically that could be done. He said I'll see him every visit, not just once a year like I am with my current neuro. Hopefully it stays this way with him.

 

[Dani1960]

Best of luck with your new neuro and new treatment plan

 

[CQ:)]

Glad your visit with the new neuro appt went well and they had a great bedside manner.

That’s why I much rather see my neurologist through the epilepsy clinic in the city when I had my surgery, then continue seeing my old neurologist in my town (my old neuro has since retired so we don’t have a neuro here now).

But the neuro I see in the city has a great bedside manner, he explains everything, always happy to answer all my questions. If we do changes meds he explains it 1st.

My old neuro used to just adjust my meds or put me then put me on a new med once we reached the highest dose

 

[Plasticmask]

I'm going to see a new neuro tomorrow. I met him at a conference and I really liked him.

My current neuro doesn't seem to want to try to make any changes to things. I was going crazy on Keppra and It took me forever to get him to get off of it and take something else. I finally did and I'm taking Xcopri now. I'm still having seizures but not as many and they aren't as bad. Another thing with my current neruo is that I only get to see him once a year, all the other visits are with his nurse practitioner or someone else. I have a heck of a time getting ahold of him when I need anything. I took my meds twice and called his office because I didn't know what to do. I never got a call back so I ended up going to the ER. Luckily I didn't have any problems.

This being not really medically related but one thing that impressed me about him is that he wrote my name and phone number down on a piece of scrap paper he found, stuck it in his pocket and told me that he'd have his office call to schedule an appointment. Well believe it or not they did just a few days later, before I even got a chance to call him. Maybe this dr will be good at returning calls fast.

I'm not leaving my current neuro yet but I'm hoping the one I'm seeing tomorrow I'll really like.

I'm reluctant to change since I'd graduated to seeing an entire "team" of four neuros a few years ago, even though with the move to my inherited home it's over an hour's drive.
Also I'm concerned that some new one will want to torture me in several different ways (which they'd discussed believe me), trying to make me seize while watching the eeg, after I've been told many times that this is a)unreliable at best and b)usually pretty darned common practice. The quarterly MRIs and CTs seem to satisfy all but one of them so I take that as good enough to suit me as well.
So the Wifey and I have discussed it on two or three occasions and decided that it's worth the drive.
Nobody on the Team feels like I'm going to be able to get better than a few episodes/seizures every two weeks or so anyway, but we still try 'tweaking' the Rxs once a year give or take, just to see what will happen since it's all expected to just get worse before I begin losing cognitive function, then bodily function, then croaking entirely.
But regardless, I mean that's what it's all about isn't it; I'm just another Lab Rat to them. Merely a matter of "The Hell you KNOW, versus The Hell you DON'T KNOW". I like these people well enough. As much as someone who can like their Doctors, at least.
You didn't like your last one(s), now you feel that you might like your change.
I truly wish you all of the best.
EDIT: Oh, forgot to mention: I'm on four meds for the epilepsy part of my situation, and in the evenings especially, I sometimes stay up too late and have minor panics, thinking, "Have I even TAKEN my PM meds? I'm not sleepy!" And I'll retake them, only to remember later that I did indeed take them less than two hours prior. I just have to note this in my Seizure Log was the instruction to me. The basic answer for me, at least, considering my age, weight, the meds themselves, etc... is that nobody cares (haha). That it's okay. "This may vary in your State or your Jurisdiction". Don't take MY word that it's okay to forget this and double up every so often, is what I'm meaning. Ta.

 

[valeriedl]

I'm reluctant to change since I'd graduated to seeing an entire "team" of four neuros a few years ago

I know I was scared to death to change. The neuro (and I guess you could also say his team) I'd been with was the same one I'd been with from the beginning - 21 years. The neuro I'd switched to was in an entire different hospital system too. So who knows what it's going to be like getting my records transferred over.

For the first visit when my new neuro came in he told me that the hospital system I'd been with doesn't transfer over the records until the day of the visit. He told me that he didn't have much time to look them over but he did a great job discussing everything thing that's going on with me with great detail.

One more thing with the office that was great - I talked to my pharmacy over the weekend and they said that they hadn't gotten the refills transferred. I called the office about it and about two hours (not two days) later I got a call back from them letting me know they were doing it that day.

Also I'm concerned that some new one will want to torture me in several different ways (which they'd discussed believe me), trying to make me seize while watching the eeg, after I've been told many times that this is a)unreliable at best and b)usually pretty darned common practice. The quarterly MRIs and CTs seem to satisfy all but one of them so I take that as good enough to suit me as well.

It's been awhile since my neuro had really wanted to do any real testing. I had a take home EEG a few months ago but my old neruo didn't do anything because of it. I got a message letting me know that and not a phone call.

I'm getting an EMU test done at the end of August with the possibility of maybe getting an RNS. I'll probably be starting a post about that then.

 

[suebear]

Happy to hear how well things have gone with the visit to the new neurologist.