epi harrassing, acting out of line, nasty and negative

Hi guys~~

Well, my supposed great epileptologist has lost a patient.

He as not been very good or fair to me since the begining of this referral 1.5 years ago.

This last visit, he sat there and said that blood levels of Depakote shouldn't be done, that you treat the person, not the paper (there is some validity to that one), he told me I have NES, when I was diagnosed with EEGs and VEEGs 2 years ago that say otherwise.  He told me that if I didn't go with what he said, he was going to release me, then I would have nowhere to go for treatment, he said meds don't help me, but how would he know, he doesn't live with it, I am the only on that can tell if the meds help.  They have had to switch 8 other times, because I have either had a bad reaction to them or they didn't quite fit the bill.

I have been afraid to go to that facility to see him for some time, now, because all he does is contradict himself several times in the same 15 minute session, he cut me off several times, when I had questions for him.  He didn't want to do anything, because as he nastily told my mother who was there to intervene, that I was only there for meds and nothing else.

He talks very negatively about having epilepsy.  I am not sure if he acts this way, because I am on state insurance and it does not cover his services or that of the facility's.  My mom thinks he may be pissed about that, so he treats me badly and unfairly in return. 

My next appointment was going to be in December, but they will not be seeing me again.

His parting comment to us was that he will assign me to a resident or PA, the next time, if he decides to keep me after I get there.

I was actually sickened, angered, disgusted, hurt and irritated by all of it for several days.  This is a person who is supposed to care about taking care of and the well-being of people with seizures.  He is a specialist, but it sure hasn't shown since I have been there.

I came home and the next day, went to my GP to get refills on meds from him, and told him about the fiasco going on with my epi, and he told me that it was a no no and shouldn't have ever gone on.  He shouldn't have been making derogative comments about my epilepsy.  My GP also said that telling a confirmed epileptic of 2.5 years, now, that they have NES is way beyond what he should be saying.  This is already enough of a touchy subject for me, and to have him doing and saying that??

He reduced my Depakote by 500 mgs (which made my D.O. quite angry) and switched it to ER formula.  I think that was wrong too, because he didn't have a current blood level on me and refused to take it saying that he didn't think it was necessary to do.

I was fairly controlled at  1500 mgs/day, and now I am taking 1000 mgs/day and in 2 weeks have had 3 seizures.

He is and has been depriving me of fair and quality treatment.

I just wanted to get your take on this and see what you thought about it, what should have been going on, what shouldn't have occured, etc.

I told my GP about this, and he referred me the next day back to the original neuro who diagnosed this whole mess, who knows my epileptic HX better than anyone.

I go to him Sept, 1st.

So we shall see.  I know he isn't going to be happy about this whole thing.

Nancy

EPILEPSY IS JUST A PART OF ME, IT IS NOT WHO I AM!!
DX: April 2003
Juvenile Myoclonic Epilepsy of Janz
2 AEDs