NHBPM Day 12: Now I’m NOT sick? Bullshit!

Posted: November 16, 2012 in Autonomic Nervous System Dysfunction (Dysautonimia), Do Doctors Care?
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I call “bullshit” on the way difficult-to-diagnose patients are shuttled between doctors – and the way none of the doctors bother to share their notes/test results with the other doctors investigating the patient’s case. Grrrrrrr…….

I just have to vent about happened today…otherwise, my head WILL explode.

I was hospitalized in early September for “syncopal episodes.” My discharge diagnosis was “autonomic nervous system dysfunction.” My symptoms continued to get more bizarre and more troubling as the days went by. I have had to rely on my PCP for treatment of the symptoms, because the specialist I that saw me in the hospital simply didn’t have the time to see me. What a great feeling – I am told I have this issue that is serious enough so that they tell me not to drive, and I get banned from physical therapy because I am a liability due to the condition, but the doctor “doesn’t have the time” for me. Even after I had the “gold-standard” test for this condition and it showed that yes, I DO have this weird condition. Bullshit!

Once again, I had to launch into the land of research to find out what they heck was going on with me. I find that one of the world experts on this condition is here, in Boston. I proceed to jump through all kinds of hoops to get an appointment with him and  his team.

My PCP, in the meantime, is running every test and doing everything he possibly can to try to figure out what is causing my symptoms. He is hesitant to prescribe anything to help with my ever-increasing bizarre symptoms, so I still have to try to manage day-to-day with them. I wish he’d give my husband some Valium though – being constantly told to “calm down” and “stop obsessing” by him when I experience the  hours of tachycardia, or the sudden insanely high blood pressure, or the frighteningly low blood pressure that reduce me to a toddler, scooting around the house on my ass because I will pass out if I stand up. Riiiiiight. I’ll try to ignore these symptoms when they happen the next time and act as if there is nothing wrong!! BULLSHIT!

Back to the specialist…I saw him today. Well, I saw him after I saw his research fellow. After all of the information I had provided to their office over the past three weeks, the fellow starts out by asking me why I am there. REALLY? WHAT? So I launch into the story of what I’ve been experiencing. I remind her that she was the one that administered the test that indicated I had this insidious autonomic condition. She asked me lots of questions, but since she doesn’t have ANY of my records from my PCP (because his office failed to forward his treatment notes),  a lot of my answers to the questions come out  sounding very contrived and phony. It seems as if she doesn’t quite believe what I am experiencing. ARRRRGHHHH!! It is such complete BULLSHIT that the staff at my PCP’s office couldn’t find the time to do their job and  share my records with the specialist, as I had requested. It was a miracle that I got this appointment – and now, it’s as if I never should have come to see this doctor at all.

So at the end of this doctor visit – I am told I probably DO NOT have an autonomic condition, but they want to re-do “the test” to make sure. And, they want me to see the cardiologist I was referred to by my PCP, who, by the way, doesn’t have any appointments until mid-JANUARY! So, it’s now official. Not a single medical professional as bothered to tell me what I should do while I am waiting to see the cardiologist THREE MONTHS from now! (The last cardiologist I saw, while inpatient for this now non-existent condition, wanted nothing to do with me. He told me to me face that “this consult was unnecessary.”) It is BULLSHIT that I keep getting ping-ponged between doctors because I don’t fit a neat little clinical picture.

So, until some doctor steps up and decides to help me, what am I supposed to do with these symptoms??? How am I supposed to get around town to do errands? Do laundry (we live in a condo and have to use the facility in the basement – not as easy as would be if I had the luxury of a washer/dryer in my own home)? How many nights do I go without sleep when my BP is SOOO HIGH I cannot even sit down? What do I do when my heart beats so fast for no reason for hours at a time? Follow my husband’s advice and IGNORE them?



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