Tomorrow I see my Dr again!

[momof3boys]

Im kind of eager to see what my dr will say tomorrow. The last time I saw him was in march when I had my first VEEG. For my follow up appointment in May, I was put with the Physician Assistant. She couldnt understand why she read in my chart that my dr put down taking me off of Keppra, if the Keppra was holding over my seizures, and my VEEG indicated Seizure Activity? onder: I told her about how he tried to add the Vimpat shortly after the VEEG to the Keppra, and how that didnt work out. Then trying to add the Lamictal with the Keppra, and telling me he wants to completely take me off the Keppra and only stick with the Lamictal. Well days after that, I had a severe allergic reaction to the Lamcital, and was taken off of it. He kept me on 2500mgs of the Keppra, which til I saw the PA (3 weeks later) I was experiencing numbness tingling sensations in my left hand and foot. It would be so irritating! Once I saw the PA and heard what was going on, she agreed I should be put back to 3000mgs of Keppra, and I asked if I could be switched back the Keppra XR since it didnt cause headaches for me. She said sure. Days went by, and the tingling went away, and so did the headaches. Ive been completely fine since! I made sure I wasnt put with the PA again, so I told them I wanted to see the DR HIMSELF! I want him to know what the outcome has been and let him personally see me!

Him telling me the seizures I had during my VEEG were not Epileptic, when the Keppra is keeping them from coming, is something I want him to see. Even the Psych dr he told me to see said the same thing. Seizure medications wont work if you have Non Epileptic seizures, like he stated I did. She (the psych dr) said to keep up what Im doing, since the seizures quit and the problems I had with the tingling feelings went away. Its best to have no seizures, and he happy, than go through being miserable and having seizures!

I see my dr tomorrow at 3pm! :woot::banana::roflmao:

 

[Endless]

I'm so glad you are seeing your neuro. Did he say why he thought they were PNES? Everything is so darn confusing. It will be GREAT to hear his explanations for everything. I hope he can simplify things and get it all straightened away.

 

[momof3boys]

I'm so glad you are seeing your neuro. Did he say why he thought they were PNES? Everything is so darn confusing. It will be GREAT to hear his explanations for everything. I hope he can simplify things and get it all straightened away.

No, the last I spoke to him, was on the phone in May, (actually it was on my birthday! LOL) and after he told me to go to my primary care dr, because he said there was no way my swollen glands could be due to the lamictal I had recently started at that time. He told me to go to my dr, because he said I had a sinus infection or something causing it. But after my dr did blood tests, and looked at me, she said I had all normal tests, and when she looked into things, it was likely due to the lamictal I was having the severe swollen glands. Her concern mostly was due to swelling that was occuring close to my airway. She had me contact my neuro ASAP, which I did. He couldnt believe what I was saying to him. But I did as he told me to do. He got frustrated and said to stay on the 2500mgs of Keppra, and wait til I saw them a few weeks later after that. Thats the last time I spoke to him.

He was so convinced that since the seizures that that I had non epileptic seizures, that he said the 2500mg should be VERY MUCH controlling my "seizures".... why he would say that, when seconds before tell me I dont have truely Epileptic seizures, is beyond me!? onder: He tried to tell me the emotions that were from the Vimpat and Lamictal, was actually from the Keppra. But what I couldnt figure out is that Ive been on the Keppra since 1998. If it was truely from the Keppra, why would it mess with my emotions now after 12 years of being on it and not affect them before? He told me I needed anxiety medications because I wasnt having seizures, they were anxiety attacks! :roflmao: But after going to the psych dr, and explaining it all to her, she said she had accsess to all of my records that my neuro had, and from the way it sounded, he was in the wrong with his findings and answers. She kept saying anti seizures medications wont help if they were non epileptic seizures. Only therapy will help. So when she heard all my seizures quit, and the emotions got better after I quit the vimpat and lamictal, and went up to 3000mgs on Keppra XR, she said its def Epileptic seizures Im having, and not non epileptic seizures!

Here i thought she was going to side with him on all of this and think Im a nut case!

 

[Nakamova]

How did it go? Did the doc eat crow and admit that he was wrong?

 

[Endless]

Yes - how did it go?

In any case, I think it may be time for a new neurologist. He doesn't even read his own chart notes and see the inconsistencies in his thinking. IMHO, it's a patient safety issue to find someone else. Who knows what his next mistake would be - maybe something that would cause you real harm, beyond what you have already experienced.

 

[momof3boys]

I will be leaving here in about 45 minutes to go see him. Its 12:47pm here, and my appointment is at 3:00pm. So In a couple of hours I will be at his office.

Im kind of on edge, just trying to think what it is he will say to me. What his reasons are going to be why the emotions I had during the time Ive taken the Lamictal and Vimpat, was so bad, but once those were taken away, things got better. And if he is going to still stick with his theory that the emotions came from the Keppra, then why did it go away and Im still on Keppra, yet alone raised my keppra from 2500mgs to 3000mgs! :roflmao:onder:

I'll update you all when I get home. His office is about 40 miles away, so it will be later this evening when I return home that I give you the update!