Missed diagnosis
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I find these types of medical mystery/missed diagnosis stories fascinating.
In 2022, I gained 40 pounds in one year and was tired all the time.
Before these changes, at 47, I biked and walked everywhere in my Los Angeles neighborhood. I wrote articles frequently. And I raised my daughter with ease.
When I told my doctor about my health issues, she sighed, reeled off obesity risks and admonished, “Lose weight. For your daughter.”
I also met with several other doctors, most of whom blamed stress, weight gain or age for my poor health.
It took three years, thousands of dollars and two inches of height for me to get the right diagnosis.
My health journey may read like a medical mystery, but it wasn’t. At least seven doctors saw my abnormal lab results over three years, and only the very last one followed the protocol.
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I feel her pain. 90% of people with my condition don’t get diagnosed. Doctors just assume it’s COPD (if you have a smoking history) or asthma (if you don’t). This despite the fact that both the College of Chest Physicians and the American Thoracic Society both say to test for my condition any patient with COPD.
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I feel her pain. 90% of people with my condition don’t get diagnosed. Doctors just assume it’s COPD (if you have a smoking history) or asthma (if you don’t). This despite the fact that both the College of Chest Physicians and the American Thoracic Society both say to test for my condition any patient with COPD.
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Experience causes me to question every diagnoses and treatment. Had the potassium draining from my body for a few months until I took a guess, googled it and had the answer in seconds. Told the allergist who had berated me for my complaint and received stone silence and a stare. Her practice shrank to one office recently.
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Experience causes me to question every diagnoses and treatment. Had the potassium draining from my body for a few months until I took a guess, googled it and had the answer in seconds. Told the allergist who had berated me for my complaint and received stone silence and a stare. Her practice shrank to one office recently.
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I’ve never been afraid to challenge doctors because do it for a living. It helps that I’ve worked in the field and picked up a pretty good working knowledge, although by no means a physician. One thing I have seen over and over is they have to come up with something or else they can’t bill it. And they certainly don’t want to admit they don’t know.
I went for my ridiculous Medicare Wellness visit a couple weeks ago and was surprised I was not asked the obligatory questions. 9 days later someone I suspect was billing staff called me and asked them. They probably couldn’t bill without the answers.
I should say my beloved primary care is on medical leave so I was with another doc. Needless to say he is not a candidate for my next PCP.
You have to be your own advocate or run a higher risk.
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I have run this gauntlet for years and years. I saw so many kinds of specialists, you name it, I saw it. Nobody could do a thing for me. An emergency room doctor, who was seeing me for a suspected blood clot (turned out to be a baker's cyst), heard me when I described my complaint, and raved about another doctor here in town. Insisted I must go see him. This was about ten years ago. I was skeptical, and had pretty much given up on ever getting help, but this one doctor turned out to be a total unicorn, one of a kind. A polymath who is fascinated by everything and who thinks outside the box. It took some time, but he was able to figure things out when no one else could, and I have gotten most of my health and capacities back, thanks to his embrace of the entire picture of the person, not just focusing on what he learned in a book or what the AMA says--or what insurance will pay for.
There are very few doctors who do what he does. There are people flying in to our town of 20,000 from NYC to see him. All word of mouth. And he teaches at conferences all over the world. He has doctors visiting here from all over the country to exchange ideas. He started a local community group to discuss the latest research with other medical professionals. All while coaching high school sports in his free time.
It's such an anomaly--and so refreshing--to see a medical doctor who is truly in love with science and learning, even as he nears retirement, and who spreads it like an evangelist. I have sent so many people to him.
I've also watched his practice shrink and the practices of so many others become stunted, due entirely to the medical insurance wolves. He was forced to stop accepting Medicare and many other insurances. "We're not a charity" he explained to me. So much of the care he gave was being denied--probably because what he does doesn't fit medical convention-- he said he either had to give up on accepting insurance or close his doors. (And of course he was eating the denied fees, rather than over-burden his patients.) I've also noticed my care with my PCP becoming truncated, constrained by what Medicare will cover, even though it isn't the care I need. The weird "annual wellness" exam being a prime example, instead of a true, hands-on annual physical.
The insurance system is destroying health care.
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I hesitate to give my thoughts on this because I'm going to sound like a grumpy old man, again.
I've been misdiagnosed and not diagnosed to this day and the common denominator has always been money and specifically greed at the end of the day.
I'm grumpy because I have a lot of reasons to be grumpy. This has been a time of transition (and still is) and from last winter to this summer has been no walk in the park.
But to the point, I'll have the ability to have a medical examination independent of my PCP, imaging of my left knee, and imaging of my right hip.
My PCP (a Board certified internist, fwiw) has some kind of formal disincentive from making referrals to specialists because the insurance industry has made this clear to him and after six years this has become clear to me if unspoken.
You won't image the knee of a 57 year old patient when it's been bad for 15 years?
This kind of situation isn't right and I'm going to fix it after I get settled.
Insurance companies were exempted from anti-trust law in the '40's. This is what happened for some reason.
We shouldn't forget, either, that Trump just defunded healthcare by almost a (edit) trillion dollars.
The insurance system, the private aspect, and the neo-liberal take over of government health insurance, is definitely the problem.
