June 3, 2013: Follow me to the Dark Side

As I mentioned in my Preramble, I’m typically cool and calm on the outside, but there’s usually a volcano bubbling over on the inside–with the occasional eruption. Today I had to—yes, I had to—go to the dark side and erupt by yelling at a medical assistant over the phone because their office has not cooperated with me or my primary neurologist in sending us my latest lab and test results.

As noted in an earlier post, I saw another doctor on May 20 to have a single-fiber EMG and more antibody testing to see if she could find something else going and/or double check if indeed my situation is MG. I also had a bone density scan while I was there since I had not had one.

The day I left their office, they told me that my results would be ready by the end of the week at the latest and that if they did not get back in touch with me with my results, they would have them ready for my primary neurologist to review with me during my next appointment with him (today, June 3).

I called the San Antonio office three days after the tests. No results yet. The nurse finally called me on May 30 to let me know that my bone density test showed some anomalies and that I needed to start taking calcium with vitamin D. Ok, fair enough. She said I needed to see an endocrinologist she wanted to refer me to. Well, I explained I could arrange that in my city with my primary doctor. I asked about my other results and was told she didn’t have anything else ready to share with me. At this point, it’s been 10 days, 7 days if you take out the weekend and the holiday.

I call back and left a message early Friday, May 31 with the nurse. No response. Well, it’s June 3 and I have my follow-up appointment with my primary neurologist. I go in, he comes into the room and says he has not yet received my results. His recordkeeper called their office while I was there and they came up with some lame excuse that they had not received a referral from them to see me so they had not sent my results. Absolutely not true! I saw the referral in their office while visiting the new neurologist, plus, I would not have been seen by them had they not had a referral. My primary neuro, just to play along, sent a copy of the initial referral to them and requested my results. By the end of the day, they still had not received anything.

I got home, very ticked off, checked my e-mail and saw that I had a message regarding an update to my online records file where the second neurologist would post my lab results. I thought to myself, “Great! They finally decided to send my info.” I logged into the system and saw the names of the tests—except the EMG—and noticed the date, doctor’s name, and the phrase “final results.” I click on them and there’s nothing in there. Not a thing! Then the rage sets in and I pick up the phone and call the folks in the neurology department in San Antonio and gave them a piece of my mind about what I thought about them not sharing my info with me or my doctor and how their system either did not work or that some incompetent person forgot to upload the appropriate files to my medical page for me to see.

The medical assistant claimed to have a note on my file saying that the doctor would go over my results with me when she saw me next. I’m not scheduled to follow up with her until September!!! The rage continues. I told the lady that there is no way I’m going to survive until September because either what’s happening to me will kill me or I’ll take myself out. (Note: I wouldn’t take myself out no matter how bad things get.) I just blurted that out. Anyway, she stammered that she would have the nurse call me to see if she could provide more info.

If I hear nothing else from the lovely folks holding my records by midday tomorrow, I will call again—calmly—and tell them that I will drive all the way down to their office the next day to pick up copies of my records to take to my primary neuro’s office for review. These people are not going to keep me in the dark. If it’s good news, bad news, or indifferent, my neuro and I need to know. He’s holding off additional treatments until he has a better idea of what’s happening. I’m holding on with Mestinon and prednisone right now and they’re really not cutting it.

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