Uncertainty #AtoZChallenge

Uncertainty     #AtoZChallenge

Much to our dismay, when we are faced with a chronic illness or worse yet multiple chronic illnesses, we often find a world of uncertainty. To our surprise, physicians are not the all-knowing omnipotent beings they were purported to be a few years ago. As diseases progress it sometimes seems more common to wind up with a diagnosis of exclusion rather than a diagnosis based upon a factual evaluation.

While there are frequently standards for diagnosing an illness or disease process, they are most often strictly defined by the insurance or regulatory agencies. Some diseases may not present identically across a population. It is my opinion that while guidelines for diagnosis are understandably necessary, we have systematically removed the ability of our physician providers to draw their own conclusions based upon symptomology and assessment.

This regulation in the field of diagnosis is necessary to protect us and guide our physicians from making false or unsubstantiated diagnoses. However, by requiring such stringent diagnostic criteria we have removed their ability to individually evaluate and treat us. It has become more common for a physician to tell us that while they think we may have a particular diagnosis, they are unable to conclusively make the diagnosis. This is because we may not meet the stringent criteria set forth by some regulatory commission or agency.

Over the last year to year and a half, I have been told I have a very serious neurological condition, that is likely progressive. I’ve been told this by numerous physicians. At least one specialist was absolutely unequivocal of this diagnosis. I was referred to a very large teaching hospital who specializes in this disease. After a few months, it was time for my appointment. After traveling over an hour to get to the appointment, I thought I was finally going to get the answers and treatments I was repeatedly told I needed.

Much to my dismay, I was very, very wrong! The outcome was that while it could, in fact, be that suspected illness, this specialist was hesitant to make the final determination. While there are concurrent factors that could influence the diagnosis, there were not any that would preclude the diagnosis. Or so I had been told previously. After an interview with a Nurse Practitioner, she went to consult with the physician.

When he came in the exam room, he was extremely pleasant but proceeded to crush my world. He proceeded to explain that while the symptoms and diagnostic studies could be attributed to said neurological illness, that he was unable to make the diagnosis at that time. He went on to explain, that essentially, we had to wait six to twelve months, then re-evaluate the diagnostic studies to see if things had gotten worse consistent with the suspected diagnosis. At that time, if things had progressed to a severity required to make the diagnosis, we could begin treating it with medication. I was so flabbergasted I could barely speak.

Please do not misunderstand me. I do not want this diagnosis. But I had been told for nearly a year that it had to be what is wrong with me. That was after well over a year of uncertainty. Multiple physicians, some specialists, had told me I had this disease. Yet none were willing to make the official diagnosis in order for me to start the medication which has been proven to slow the progression in some patients. I was crushed because the medication has been studied to be most effective in the first two years after onset. I am already past the two-year mark. If I wait another six to twelve months, I will most certainly be further behind the eight ball than I was. What does that mean to my prognosis?

Because I did not meet the “gold-standard” of required items to solidify the diagnosis, he would not make the diagnosis. Gave me a bunch of things that must be ruled out over time. Things that other physicians had already told me were ruled out. While the gold standard is a guideline, not a hard and fast rule of diagnostic criteria, I was informed that there is no room for judgment in the clinical criteria. Isn’t judgment the definition of a doctor’s evaluation of your situation? It is the physicians’ judgment as to what is wrong with you. It is their judgment as to how to best treat your illness.

So I left the appointment with even more uncertainty than when I arrived, and near hopeless in terms of finding a diagnosis and achieving effective treatment. So now I get to sit and wait in limbo. Without a clue when and if I will get an official diagnosis and treatment. Unsure of whether that treatment will even be effective. Uncertain of a medical profession that has determined I must get much worse before finally making the diagnosis so many have told me they feel is the culprit.

One long, slow, uncertain day at a time. I’m not necessarily hopeful that I will get better, but I am absolutely hopeful that I will not continue to get worse. Sadly by not getting worse, I will ensure that they will not be able to make a diagnosis, which effectively means I will eventually get worse as the culprit will be left untreated.

Have you encountered uncertainty in your care? How do you handle uncertainty? What is your story of uncertainty? Please share with us in the comments below. We would love to hear your story!

4 Replies to “Uncertainty #AtoZChallenge”

  1. Interestingly, this is relevant to me today.

    I was supposed to see a pulmonary doctor today. My family doc office had set it up for me. I knew the name of the practice I was going to. The actual doctor (there are like 10 of them there or something) name was on paperwork they sent– handwritten. I had glanced at that paperwork and read a name different from the real one. It looked like it started with an X.
    Push those brackets together– that’s the visual.
    But it was really a K.
    This was the doctor I had seen before. 12 years ago. This is the one who let me almost die (patient not breathing, unresponsive to light, sound, or painful stimulus) on his floor after he insisted he watch me have a respiratory attack and he be allowed to hold my inhaler. You know “keep away”? Picture that with an old doctor guy and his patient ON THE FLOOR unable to speak the word “help” but trying to communicate until consciousness was lost and unable to be regained without assistance.

    The follow up appointment was him saying he had no idea what was wrong with me and couldn’t help. He refused to sign a form that would have allowed me to continue getting disability from work *where my problem began. He wouldn’t sign a form verifying any diagnosis at all so that I could qualify for state insurance. (And really, they said any medical condition would do. Headache even. Anything. But nope.) And when I asked him then to sign a form, the medical release for me to return to my job, he LAUGHED. “Oh no, you definitely aren’t fit for that. No, I can’t sign that.” So I asked again for him to sign the form stating just that– that I was not medically fit to return to work, and thus could retain my disability pay.

    That’s when he became angry and demanded that I leave his office and never return. Before that moment it was just, “I can’t help, please leave.” But then it became an order.

    So no, I didn’t go to a doctor appointment today with him. I didn’t, nor will I, give one more penny to the man who has made it legally impossible for me to earn money by 98% of all legal means. The one who cut me off from insurance, resulting in my health deteriorating for 2+ years until my love got insurance and we got married. No, not one cent. Plus, this doctor already gave up on me. He already said he won’t help me. Why would I go back? Definition of insanity still doing the same thing while expecting different results? Ha ha ha. Nope.

    I called my family doctor office this morning. They cancelled the appointment for me (to try to prevent billing issues). They’re going to find me someone else.

    14+ years with this. Still uncertain of a diagnosis. But at least less willing to take crap.

    1. First, I’m very sorry you had to go through any of this. While it doesn’t compare to your story, I recall once after having IV sedation for a procedure, I was lying in recovery. The physician came in and decided to give me a reversal agent to counteract the narcotics I had been given in order to facilitate my discharge. It should not have been given at all seeing how I had a morphine pump at the time (unrelated issue). I immediately went into a full blown seizure and as I was beginning to come out of it I recall the nurse arguing with the doctor for ordering the medication in the first place. He proceeded to yell at her that I was simply having an anxiety attack and all I needed to do was “man up” and I’d be fine. So I laid there for hours in excruciating pain which was exacerbated by the medication induced seizure.

      As I said, I think every physician should experience things from the aspect of being a patient. Some of the best physicians I know have experienced being a patient, and they will gladly tell you that it thoroughly changed the way they interact with their patients.

  2. Yes! I remember the feeling of hopelessness when I realized as a mid-teenager that doctors really don’t know everything, and that far too often they aren’t able to help like they wish they were able to. I went for five years without a diagnosis, and that was really hard. Still, I’m thankful for all they did to help.
    Visiting from the A to Z Challenge. See my “U” post here: https://lydiahowe.com/2017/04/25/u-is-for-uncle-izaac-atozchallenge/

    1. Thanks for sharing your story! Sadly physicians often don’t know as much as we would like to think. After all, they do receive a lot of training, but the human body is a finicky and intricate creature. As such different people may present different symptoms despite having the same diagnosis. Thankfully the majority of physicians still do their absolute best to help even if they are not entirely sure of the root cause. As with any profession, there are a few instances of people not being able or willing to admit that they do not know. Often that result is not a good one. Hopefully, you are among the lucky to have a diagnosis now!

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