time for a new neuro

Well, I wondered in my last post what was the worst that could happen. Be careful what you ask for.

This past week my case manager called me from the navy clinic. She had been searching for my neuropsych testing referral and couldn’t track it down, so she wrote one herself to the facility they normally use for active duty referrals. She said that the neuro’s office told her that the referral hadn’t been sent yet because the dr’s dictation hadn’t been written out yet so it could be included in the referral.

Then Friday morning, my neuro’s office called. The clerk said that the neuro he wants me to see for autonomic testing won’t take my insurance. She said that he really wants me to see him and that they will take a payment plan. I told her plainly that driving across Connecticut, the office visit, plus specialized testing, all out of pocket was not going to happen. She called me back after talking to my neuro. She repeated that he really wanted me to see this guy and if I don’t he is out of ideas. This sounds like go or find a new doctor to me, but then again, I am admittedly predisposed to thinking they are full of it.

I called my case manager. I told her that with all due respect, these people seem to have all forgotten that they work for me. I am the patient and I have rights. If he wants to drop me as a patient thats fine with me. He says he is out of ideas anyway. She told me that she will discuss my case with the neuro’s office, my primary care dr and some bigshots at the clinic. She says that they will do 1 of 3 things. 1) Grant exception to policy and pay for the out of network provider to do the tests. 2) Find an in network provider for the tests. 3) Send me back to the hospital. I told her that I just want to get well. I can’t even get a med to slow the progression of symptoms, which now includes pain in my face and jaw, and another flare up has me weak on the left side. If the only way to treat and diagnose this autoimmune insanity is to go back in the hospital, so be it. She will call me on Monday.

I know many of you can relate to diagnostic bs from your docs. My mother in law spent 10 years waiting to be properly diagnosed with MS. I have only been going downhill since January and autoimmune issues are immune to regular lab tests and standard treatments. But the part that angers me is the tone the doctor took. As if I should pay 1000s to go see his colleague just because he won’t know what to do if I don’t. These people work for me. His job is to make me well. If he can’t, then get out of the way.

Thanks for letting me vent.