More questions..ahhh

[MonkeyMom4]

I'm still waiting to hear back from the Neuro regarding the 5 seizures I had in my sleep. I had an appt. with my PCP last Friday so I could discuss all my questions with him. He was upset that he hadn't been informed about the seizures and actually grab his cell phone out of his pocket and called my neuro (who was out of the office that day..of course)

I left the office with more questions than answers (nothing new there) but he wrote down all my questions (I watched him) and then he said he would call me sometime this week. They finally called yesterday...the nurse did...here is what she said:

'Doc so and so heard from the Neuro and he is not able to give us any information over the phone, he said he needs to see you in person to discuss this.'

Hmm...when would that be? We're still waiting to hear when they can get me in. I called the neuro yesterday to inform them that I'm not currently taking any antiseizure medications and to see when they can get me in.

Here are my questions:
1. Does having 5 seizures count as having a 'seizure disorder'?

2. Am I going to lose my drivers license?

3. Are my seizures really 'no big deal' considering the neuro doesn't seem to worried about seeing me anytime soon?

4. Why couldn't the neuro just explain to my PCP over the phone? I'm assuming it must not be good news.

Thanks for all your help
Always appreciated!

-Kelly

[MonkeyMom4]

Thanks!

I was taking Keppra for Trigmeinal Neuralgia but I couldn't handle the side effects and it made the glands in my neck HUGE! (Looked as if I had the mumps)

I actually rececived a voicemail from the Neuro nurse a little bit ago. She said Dr. P would like to know if you have had any more syncope episodes and that I do have an appointment scheduled for Dec 14th but she said we are hoping to get you in sooner than that.

I know I shouldn't assume but I'm guessing that maybe the neuro did speak with my PCP and the nurse wasn't able to tell me anything over the phone so she said I would need to see the neuro to discuss it in person.

My PCP has full disclosure on everything, every other doc I see I always make sure that my primary doc gets a copy of it.

Thanks again,
Hope you all are well.

[Audrey_M]

Kelly:

This is truly bizarre. I can't imagine that the neuro would not provide information to either you or the PCP and then keeping you hanging by not giving you an appointment.

Did you let your PCP know what the neuro's office told you? If you've signed release papers, there is no reason in this world that your PCP should not be informed.

In answer to your question about 5 seizures qualifying as a seizure disorder, the answer would have to be no. Seizures can be caused by things other than just epilepsy. Febrile seizures are commonly seen in small children with high fevers. In adults, the discontinuance of medications or alcohol in alcoholics can cause seizures. I noticed that the MRI of your brain was normal; brain lesions can cause seizures.

I looked at your other posts and saw that you are taking Keppra. Who prescribed this and why? This medication is typically used to treat seizure disorders, but does have off label uses such as neuropathic pain. Abrupt discontinuance of the drug may cause seizures. You said that you are not taking any anti-seizure medications right now, so I take that to mean you are not taking the Keppra right now?

I always like to say don't assume...there's what saying "when you assume, you make an a$$ out of you and me."

My recommendation would be to call your PCP and brainstorm on what to do next. My thought would be to send a fax marked urgent, requesting that the neuro contact your PCP ASAP to discuss his/her findings.

Good luck and hope you get some answers today.

Audrey

[Lulu54]

Kelly, it is human nature to jump to the worst possible conclusion on these types of calls.  If you were in immediate danger I would think the neuro would be talking to you now and not later.

I have heard some pretty high numbers about the number of people who actually experience seizures and don't know it.

Prepare you questions for the doctor and be ready to get answers .

be well, Lulu