Failed By Modern Medicine Again

IT IS SO very interesting to read your medical records. You can find out things about yourself you never even knew (besides just a "diagnosis") and things you may or may not have said and the manner in which they were interpreted.

I recently had the pleasure of reading through my own records sent with me down to Cleveland and, boy, was I surprised. I learned that it was "I" who requested a visit to a neurosurgeon and that even though it was believed my syrinx was not the cause of my issues, the request would be honored (I actually asked what my options were, and neurosurgery as well as physical therapy were offered, so I said I would like to pursue both). I also found out that a diagnosis of fibromyalgia was being considered, which for the life of me, I cannot recall ever being mentioned to me before. So nice to know.

Now, I understand these reports are dictated after the patient leaves, but if this possibility crossed her mind AFTER I left the office and while dictating the note, wouldn't it make sense for someone to pick up the phone and call me with that information? If I had not read through the notes, I never would have known.

That is not really what makes me feel I have been failed, though, and truly just could have been an oversight; or maybe she really DID say it and I just did not process it (some of the symptoms I suffer from are intermittent confusion and disorientation along with memory difficulties). I am not going to nit-pick over it, especially knowing that if it IS fibromyalgia, there is not a whole hell of a lot they can do.

No, what makes me feel as though I have been failed is the constant "I don't know." "I don't know." Fine, you "don't know," but YOUR JOB is to find out the answer - not just roll your eyes at me when you think I am not looking, tell me it is all in my head or that "there's no indication" for me to have a certain disease process, that my symptoms do not correlate with my exam, or (the worst transgression of all) tell me that I am faking.

Oddities like mine come up rather more often than most physicians seem to be able to accept, or there would not be shows on TV like "Mystery Diagnosis" or "Diagnosis Unknown." In so many of the cases profiled on shows like this, the patients were told these exact same things, living with terrifying and horrifying symptoms for years before, finally, the 75th doctor they have seen actually LISTENS to what the patient is saying and sees that 2 + 2 really does make 4 and not 3.6.

In my opinion, the biggest part of the problem stems from:

1. Every doctor is a specialist. No one sees anyone for a variety of symptoms, only a specific symptom, and many disease processes manifest in ways that affect multiple organ systems and showing by some symptoms or not others.
2. Everyone is mentally ill these days, so when someone complains about a vague symptom and there is nothing clinically to show what the cause is, it is too often written off as a "psychiatric" issue. This disturbs me to no end, with new and more exciting psychiatric "diseases" falling off the shelves at an astonishing pace, many of which are normal human functions. It is almost as though they are trying to define our entire lives as a disease process that needs to be treated with drugs.
3. Insurance companies frown upon doctors running "too many tests," so tests are not run that might have been - had the insurance companies not been interfering with the ultimate diagnosis and treatment of a patient, again, just because they have vague symptoms. I have seen cases where preventative, diagnostic, and therapeutic treatments were denied payment only to result in the patient's condition worsening into a crisis, hospitalization in a critical care unit (which costs the insurance carrier a HELL of a lot more than that other stuff would have), or even death. Not only is it wasteful, it is unconscionable.
4. Some diseases or conditions are rare and ruling out more common possible causes always comes first; but when those common causes are dismissed, even though a rare condition may be considered in the differential, it is difficult to follow those other things up, sometimes because of #3, other times because it is hard to think outside the box and accept that a rare condition may have been presenting or even some variation or combination of rare disorders.

Now, I know I do not have all the answers and I really am trying my best to be patient, but after a while one becomes more than a little perturbed. What we do at that point is up to us and how hard we are willing to fight to get an answer, or are we willing to be a sheep and follow along, maybe take some happy pills to cover up the grief suffered for a life and lifetime lost unnecessarily, and try to live out what is left to us with some dignity and then give up?

I may be an iceberg and may be destined to a rather unspectacular end, but until I do, I believe it is in my destiny to strike a few Titanics along the way.