Am I being difficult?? - Epilepsy Message Board

Lisa T · 01-29-2004, 06:00 PM

I go see my neuro on Monday, so I need opinions between now and then so hurry Okay!!!

The last two times I have seen him, he has wanted me to go in for EEG monitoring (a three day to two week stay depending on what happens).

Anyways I know this is no big deal, but I refuse! I have done three stays in the hospital (two were week stays and one was a three day stay) none showed anything. I have had regular EEGs done, nothing. So what will this help?? The only difference is, I have never done one with him. They have always been with other doctors, so.... do I give in? I think its silly to keep doing the same tests over and over again. Yes I know, maybe we'll get lucky this time and catch a seizure. I have never had one in the hospital, I don't know if its because I lay there and do nothing but think about having one so I can get out of there or what, but they never come. Is that uncommon, not having one in there? I really don't want to do it again, but my husband is pushing, my mom, the doctor.... I feel like if I say no again they all will think I don't want to get better... I just don't want that disappointment of hoping THIS TIME

and then NOTHING

Am I wrong? Am I holding my progress back or will it go fine either way?

He has me on Topamax, and it is the first med that has made a dent in my seizures. I'm back up to twelve days inbetween again (holidays thru me out of wack!!) and I'm only on 75mg and 400mg of Magnesium Oxide (to help with the headaches that topamax GAVE me).

Thanks in advance guys (even if I don't like what you have to say.. I need to hear it!!)

Hope you all are having a good night!
Lisa

gagcas · 01-30-2004, 05:37 AM

Hi Lisa
if this is a new dr. i would definatly go in and do the test. im not the one in my famliy with the epilepsy, my son is but if he is a deffierent dr. thenm he may very well see something different. i have read alot of posts on here where people have tried dr. after dr. until they find one that will listen(dont know if this is why you have a new one or not)and he ends up finding and taking care of something that the other ones either wouldnt listen to or hear about. i guess its like the dr. is going in with fresh eyes. kind of like if you lose something and you look and look and look. but once you stop looking for a little while you end up finding it. your test may not show anything but he may have some different answers than the other ones did. i know it seems like a waste of time but i have learned with my son that this epilepsy thing is no where on the line of being predictable. i hope i helped you in some way and everything turns up. like i said i dont know what your backround is but i hope i helped a little bit

Lisa T · 01-30-2004, 07:06 AM

The reason I am going to him is because he listens to me! He is the best doctor I have had!!

Its just, hard to find someone to watch the kids, get them on and off the bus, the hospital is a two hour drive away (what other excuses can I find...

) I want him to up my dose more than 25mg this time and maybe then I will consider if I don't get a better spacing of my seizures!!

Like I said I could come up with a thousand excuses, but the main is the disappointment. I just don't know...

Thanks!!
Lisa

gagcas · 01-30-2004, 07:35 AM

well thats understandable. i didnt realize you had the kids. did he say why he wants you to have to tests for him. is it because he just needs it for his records. im wondering if he has your other test results. unless he sees something in them that he is curious about, then why would he have another one done. thats the only reason i can see that he would want one. who knows. i hope you figure it out. keep your head up.

gavman · 01-30-2004, 09:28 AM

Is it possible for your new doctor to read your previous studies himself (if he hasn't already). I have heard of people getting different results depending on who reads the EEG. Just a thought. How frustrating this must be for you!