Growing frustrations. Am I getting the runaround?

[elizzza811]

About 4 weeks ago, after my post-seizure prolactin came back 'normal' (and that's a story in itself), I talked on the phone with my current neurologist. Although she'd been leaning towards a video EEG all along, with some persistence, she agreed to order a 72-hour ambulatory EEG after I explained to her that I couldn't just pick up and leave for a couple of weeks for video EEG monitoring...I have pets and other responsibilities to attend to. So I was able to talk her into the 72-hour ambulatory EEG, and the conversation ended with her promise that she would look into finding a place that would do it.

About a week ago, after not hearing from her for 3 weeks, I called. I called to request records as I am switching neuros come 4/26. Plus, I wanted to find out what the heck happened with the 72-hour ambulatory EEG I was supposed to be getting. They claimed that because I was switching neuros, I should wait for the new neuro to order testing, but they didn't even know I was switching neuros until last week, and I reminded them that until 4/26, this neuro is still my neurologist, my only neurologist.

So after that conversation I quickly got off the phone and called the closest hospital, the hospital that had performed both my hour-long EEG and 24-hour ambulatory EEG, and they confirmed that they do indeed do 72-hour ambulatory EEGs. Keep in mind it took me all of 5 minutes (not 3 weeks and counting) to discover this information.

So I called the neuro back, and some words were exchanged, because I felt as if they were using the fact that I was switching neuros as an excuse to now blow off the 72-hour ambulatory EEG, even though they had evidently blown in off prior to my decision to switch anyway. They immediately sent me a HIPPA form to sign in order to send records to my new neuro, but I wasn't at all surprised to NOT find a slip for the 72-hour EEG in the same envelope.

I called today again to inquire. The receptionist is telling me again that, since I'm switching neuros, I should wait until I see my new neuro, and that my current neuro would want me to go to a Epilepsy Monitoring Center anyway, rather than proceed with the 72-hour ambulatory EEG.

Was I seizuring during my phone conversation with this neuro? Because that's not how I remember our conversation. And if she truly wanted me in an Epilepsy Monitoring Unit, wouldn't I have to have some sort of slip from my doctor to get in? I can't imagine I'd just show up?

I'm extremely frustrated with the care I've been getting. In fact, the neuro just called me personally, and now denies ever agreeing to the 72-hour ambulatory EEG, although she wouldn't actually admit this to me on the phone no matter how much I persisted! She just kept saying I'd 'refused' (to make me sound defiant?!) the video EEG monitoring that she'd 'prefer'. And now just to wait until I see my new neuro, which she 'knows'. I don't even want to see the new neuro, if she's anything like her!

And why do I have to 'prove' OBVIOUS seizures in the first place in order to go on meds? Nobody ever made me 'prove' any chemical imbalance to go on antidepressants or OCD meds, and they have side effects. I told them my symptoms...and they believed me!...and since they sounded like depression and OCD, and I could have all the meds I ever wanted!

But with seizures, I have to 'prove' something electrically wrong caused me to crash my car and burn holes in my fingers unaware?! Even if my video EEG came back normal, I'd never feel comfortable driving again (off meds). And if any neuro claims my brain is electrically fine, I want to be able to drive their children to school every day!

I'm having a nervous breakdown here!:-(

 

[Dignan]

Unfortunately, many doctors offices don't provide good follow up even under emergency conditions, so oftentimes normal conditions are flat overlooked. And, they don't like to admit this type of thing.

They are probably covering themselves and not wanting to do extra work, now that they know you won't be staying long term with them.

I'd just go to the new neuro and ask for the ambulatory EEG to confirm diagnosis going forward. Forget about the old doc. It's my experience that once words are exchanged with a dr.s office it's best just to move on anyway, since they keep note of that sort of thing.

If you try the new neuro and don't feel comfortable with that one, I'd look for an University Epilepsy Center in your area, and see if you can get an appointment with one of their neuros. You may need to get your GP to help get such an appointment, as dr. referral is sometimes required.

 

[elizzza811]

Thanks, but my GP is half the reason I had to crash my car to even realize I was seizuring...she refused to order neuro tests on me until she got my psych records (I refused), she refused to refer me to a neuro until she got my psych records (I refused), she refused to give me my medical records unless I paid $25 (I refused). And then I crashed my car.

Should I write a letter to this neuro though just to document my version of what occurred? I want the new neuro to hear my version, too.

 

[Dignan]

Just my opinion, but I don't think a letter is necessary. If you are concerned about seizures and are going to see a new neurologist, you should have an opportunity to tell them your side of things when you have your first appointment with the new doctor.

I'd just focus on your concerns about your health, what you think is going on, and the tests you want done to confirm. Other than saying you don't feel your concerns were being dealt with properly, I wouldn't go into too much detail about personal issues you may have had with the other doctors.