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Friday, March 12, 2010

Dropping the ball again!

At this point I have been on an anti seizure med for ~9 months. It causes really bad memory loss. All of my doctors agreed that the seizures were all caused by my uncontrolled BP. So one day at PD clinic, I ask my nephrologist if I could begin tapering off this drug. He says it will be fine with him but I needed to go have an EEG conducted just to make sure everything looked right. So I did.

He sent me to a neurologist here in town. He was a good doctor and I have no complaints about him personally. His staff on the other hand were a different story. I have had several EEG during my illness and they have always been conducted at Barnes in a very professional, quiet setting. Not here at home! I was told to sit in a lazy boy type recliner. It took the EEG tech 45 minutes to place the electrode pads on my head. That was a really long time. The procedure itself takes about 45 minutes. Anyway, the test begins and two ladies are in the room with me chatting up a storm. Just yapping through my whole test. At one point someone knocked on the door, and they all three proceeded to move a different chair out of the room and into the hall. Talk about distracting. This did not seem to be protocol to me.

But the story gets worse. We finish the test and I go to the front desk to check out. The receptionist said I owed 7o something dollars for my copay. Our insurance does not have a copay and I tried to explain this to her. She said, "everybody has a copay" in this very condescending voice. She then told me I could not leave until I spoke with someone in the insurance department. She led me down a hall into a room of several women. The one I needed to talk to was busy with someone else, so another lady attempted to "help" me. She told me I couldn't leave with out paying. I have been to so many doctors by this point, I think I have an understanding of how my insurance works. I told her I have a private insurer who is primary and Medicare who is secondary. A third lady spoke up and said, don't you mean Medicaid, you are too young to have Medicare! I about blew a fuse. I said, No, I have End Stage Renal Disease and yes I have Medicare." I was so pissed that they were treating me like an idiot. I jerked my insurance cards out of the ladies hand and left. I was not mad that they thought I had Medicaid, I was mad because they treated me like I didn't know what the hell I was talking about and trying to make me feel stupid. And I bet they treat a lot of other people that way too!

I went home and wrote the doctor a letter explaining how my experience with his staff had been. He then (in my opinion) decided to make it very difficult for me to get the results of my EEG. To make things worse, my nephrologist made little attempt to get the results either. So 2 months after the EEG, I found out my test results were normal and am now happy to report, I am off seizure medication.

With some of these doctors it's like pulling teeth to get anything accomplished.


  1. So why didn't you just call the neurologist to get these results and have him wean you off the seizure medication? He's the one to do that...not the nephrologist...the neurologist or your family doctor...

  2. Good question. The reason my nephrologist was inlvoved was because the nephrologist was the one to refer me to the neurologist. I am sure my PCP would have helped me if I had asked, but I figured 1 doctor could handle it. Also, I did try to obtain the results myself. I wrote the neurologist a letter and I called his nurse and asked for them. The nurse told me, I would have to get them from my nephrologist. So, I think I had explored my options.

    And to be honest, the nephrologist is the one who "broke" me.....so the nephrologist should have been the one to "fix" me. I would have never been on the seizure med if my nephrologist had been doing their job in June.