Hellooo? Anyone there?

[Ann T.]

Hi, Everyone:

As many of you know, I'm trying out Vimpat. Well, I had 2 very mild break-through seizures, 1 yesterday & 1 today. My neurologist told me to call him if I had any seizures, but what do I do if I don't have his email (he refused to give it to me, even though I promised I would not bother him unless it was absolutely urgent), nor a reliable phone # I can contact him at? My neurologist's office phone was on "if you need to schedule an appt, please press 1; if you need a refill, please press 2..." mode yesterday & it was driving me nuts! onder:
It has gotten to the point where I've had to contact a previous neurologist friend via email, but at the same time, I feel like I'm betraying my current neurologist's trust by seeking the advice of my previous neurologist who answers my questions without complaint. How do you feel about my delimma? Any advice would be appreciated. Many thank yous, in advance. ~Ann

 

[epileric]

I'm here

If there is an option to leave a message by phone I would suggest you leave a message itemizing your seizures. Otherwise I would call Mon. morning & leave a message with the receptionist if the neurologist isn't available.

I would also ask the neurologist (or have the receptionist ask) how he expects you to contact him when not giving the clients any way to do so.

And just in case you're not already, remember to mark down the time, date & details of your seizures on the calendar or seizure diary.

Since you're doing all that you can, even if you feel it isn't very much then there's no reason to stress over this situation since there's nothing else you can do. It seems to me the only consequence to not contacting your neurologist right away is stress, especially since he will know as soon as you can contact him. Remember that stress is often a trigger for seizures.

 

[Nakamova]

My neurologist's office has a message that also includes an option for an emergency, where the neurologist or attending epilepsy person gets paged. Is this an option for you?

And I agree with Eric, it's okay to get in touch with your neuro friend -- your health and peace of mind are priorities, not your current neurologist's trust. Since he's not available, he should be able to understand your getting touch with someone else -- he may not even need to know.

 

[Endless]

Anne,

There's no neuro on call during off-hours for emergencies? And the neuro's nurse doesn't take calls and messages for the doctor during office hours? That stinks! And it's highly unusual.

I'd talk with your neuro about it, and compare it to the usual set-up at other offices. If things don't change around there I'd get a new doctor. In the meantime, I'd talk to your other neuro friend, as a stop-gap. But you really need a doctor you can communicate with in the ways you need to.

It's funny how the best doctors can have the worst office procedures, and it makes the good doctor into a bad doctor. Brilliant with medical knowlege, complete dweebs when it comes to business and running an office. Unfortunately they have to have BOTH to serve their patients well.

 

[ddr1166]

Hi - I agree with all the folks above. Yes, they should have an emergency number, and YOU are the most important person here, not any doctors. I also try to become on a first name basis with the "gate-keepers" so to speak. In one instance, (another situation), I sent flowers (very small coffee cup keepsake) to each of the front office girls. Bribery? Maybe...funny how I get almost immediate service from them when needed....the flys to honey theory. Cheers, D

 

[Bernard]

When your doc tells you to call him if you have any seizures, ask him what number to call and how to leave the message.

 

[travel bug]

Were you able to talk to your neurologist on Monday, or hopefully before Monday? Are you feeling better?

Let us know how you're doing

 

[Blondie47]

Ann T.

You deserve to have your questions answered without complaint. And in a timely professional manner. Really - you shouldn't have to feel like this. But sometimes it happens -- frustrating for sure, especially when you are in a new drug trial and need answers!

Curious - why did you switch doctor's?

Take Care:e:

 

[Ann T.]

Hi, Blondie!

I switched doctors because, believe it or not, I had 4 different neurologists in a 12 month period! Every 3 month appt I had a new neurologist. I got so fed up, I went up to Chicago, then the director of the neurology dept told me to return to St Louis because "if you have a sudden TC seizure, I wouldn't be able to care for you due to the distance." I thought about it & said, "All right." Then my neurologist friend I email when I have a question told me the neurologist he taught as a med student while he was my neurologist said that she was a neurologist in St Louis. So she agreed to be my neurologist, and of course, 3 months later she had to leave because she needeed & wanted to care for her father at home, which was out of Missouri. Since the neurologists were all unfamiliar to me by 2007, they assigned me a neurologist, who happens to be the director. So, that's why he's so busy & won't give out his phone or email.

Whew! Sorry my answer was so incredibly long. Hope it makes sense & I didn't bore you, Blondie... ;-) Take care!