When Your Diagnosis Is Not What They Originally Thought

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There are times when doctors only seem to see what they want to see. A doctor or nurse who doesn't want to see anything will dismiss a patient's concerns or ignore them completely. When that happens, you have to wait for your condition to worsen before anyone will take you seriously. Then there are times when they see something that isn't really there; doctors with different specialties will see certain conditions in different ways that stack up with what they know. That is how misdiagnoses can occur.

Several months ago, I published a Hub called "Things You Can't Do with a Seizure Disorder." It's a list of things one of the neurologists I saw told me were the restrictions on my life going forward. His attitude toward it was "You have epilepsy - deal with it." My diagnosis was based on the only test coming back borderline abnormal was the EEG (the brainwave test). It seemed like a reasonable conclusion to come to at the time. Each time I had an episode it could be explained away by something in my environment or my body: flashing lights, fatigue, cold medicine, hormones - you named it, my doctor blamed it. This year, however, was worse. Simply taking more seizure medication didn't help as the attacks just kept happening. After I was finally hospitalized again, they discovered that I had a dangerously fast heart rhythm. The problem was the electrical wiring of my heart, not my brain; I went from having a seizure disorder to a heart condition. This does not invalidate what I said in that previous Hub (the doctor did say all of that to me when he thought I had it, after all); it just does not apply to me in the same way anymore.

What I actually have is called ventricular tachyarrhythmia (VT for short). It causes fainting similar to how a seizure would and even has the same symptoms. The new doctor I saw recently says that many EMTs and medical professionals see the stiffness, twitching, and incontinence as indicative of a seizure disorder specifically, even though can be true of all fainting spells. This, he says, is the difference between a professional and a specialist. It's not that other doctors are stupid or incompetent (unless they give up and ship you somewhere else because they just don't have the capacity to take care of you), but diagnosing these things can be tricky, especially if they don't listen to the story the patient is telling them and they have their own set ideas of what it must be. Because I am not confused for hours afterward like someone with actual seizures, this new doctor is certain that I am not having them.

I take heart medication now and am slowly easing off the seizure medication. As far as I know there is still reason to be cautious while swimming or climbing as I can still have the heart rhythms at any moment (the continued palpitations fibrillate for themselves). They also implanted me with a defibrillator/pacemaker in case I don't come out of it on my own. Because of that, I have to stay away from metal detectors, magnets, and strong electromagnetic fields (no more MRIs for me) and be very careful of sudden impacts to my chest (including not facing the shower head anymore, of all things). It also makes using my left arm a lot more difficult (doesn't help that I'm left-handed). It also doesn't help that all the people on the pamphlets are elderly or at least middle-aged, so I don't have as much of a reference point for someone in their twenties like myself can actually expect do with their life. My options are limited enough as it is. However, because there is nothing wrong with my heart's plumbing, as they call it, I can still follow my normal diet (because my cholesterol and blood pressure are awesome). That being said, having this condition does mess with you on a psychological level (I'm young and healthy, so why is this happening to me?!). Therefore, it's important to have people around you who can support you both physically and mentally without asking too much of you while you're trying to recover and adjust. The last thing the doctor wants you to do is stress yourself out over the bills or anybody else's problems. Being able to channel your stress and the trauma of your experiences through creativity can help as well.

In conclusion, don't let the ER doctor send you home with chill pills and tell you to walk it off if you've experienced what could potentially be a life-threatening illness. Get a second opinion (which will always be different from the first, believe me) from a trusted medical institution that can best serve your needs and get to the bottom of things even if you have to be treated like an experiment along the way. Find someone who will listen, which is rarer than you may think; that person might just save your life.

Included as something whimsical to think about instead of such dire illness. Not meant to imply that anyone is a quack.
Included as something whimsical to think about instead of such dire illness. Not meant to imply that anyone is a quack. | Source

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