Lyx4088

Lyx4088 t1_j5v0kmh wrote

That has nothing to do with people not being diagnosed by a primary doctor. Seriously. Do some reading on what is actually going on and how deficient medicine truly is rather than making asinine assumptions and equating correlation with causation and direct effect. You’re also misrepresenting the opioid epidemic as a patient problem which is absolutely not the case.

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Lyx4088 t1_j5uzvae wrote

What do those have to do with anything? A patient coming to a doctor looking for answers to what they’re struggling with does not mean they’re faking. The opioid epidemic was caused by doctors and pharmaceutical companies underplaying the addiction risks for far too long. That has nothing to do with patients who can’t get diagnosed. Pain is a common symptom of many diseases, but having pain doesn’t mean drug seeking. And if you’d bother to read anything (because clearly you’re not) you’d see that doctors are not prescribing pain medications when not warranted based on the presenting complaint to a huge extent, and that is even more true in todays world where they’re even going after pharmacies for not controlling opioid medications better and verifying abuse. Trying to discuss opioids in this context isn’t even the same thing.

https://undiagnosed.hms.harvard.edu

https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-investigators-pursue-every-clue-to-solve-patients-rare-diseases/

And medical marijuana? What does that have to do with anything. You seem to be making an assumption that the people who are going undiagnosed are walking away with either an opioid prescription or using medical marijuana with zero data to support it. Stop distracting from the fact that you are absolutely wrong in your baseless assumption people who are undiagnosed after visiting a primary doctor are faking.

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Lyx4088 t1_j5uuh2v wrote

Wrong again. Yes there is. https://www.orlandohealth.com/content-hub/doctors-sometimes-prescribe-drugs-patients-dont-need

Antibiotics are the biggest culprit of being prescribed when not warranted. That absolutely has issues, but the people pressuring their doctor for antibiotics are not the people who are going back time after time over years to a number of doctors trying to figure out what is going on with them. Those are not the people who are going undiagnosed with symptoms that can’t be currently (emphasis on currently) be explained by the doctor overseeing their care.

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Lyx4088 t1_j5utbbm wrote

A doctor prescribing something doesn’t mean insurance will cover it. For someone who was insistent a personal story was non-representative, who was then confronted with multiple statistics across numerous diseases and hard data numbers, you sure are making a whole lot of personal claims with no evidence to back it.

Edit: it’s also worth noting that a doctor not diagnosing a patient with something doesn’t mean they’re prescribing something anyway. You’re mixing up an inability to diagnose with prescription medication use. Though doctors do and can prescribe medication when a diagnosis is not clear, it’s more likely a doctor won’t prescribe anything.

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Lyx4088 t1_j5us7hv wrote

I’m well aware of how stats work. Are you? I don’t think so, because if you were, you wouldn’t be saying quite literally millions of people are faking and putting themselves in enormous medical debt just to support the faking. People don’t work like that. Not having an easy to diagnose illness doesn’t mean you’re faking. And things like autoimmune diseases, endometriosis, heart issues, cancers, etc all have hard metrics to point to in order to support the diagnosis. Genetic diseases have literal genetic differences you can point to and say this is why your body is having issues because you’re not manufacturing this enzyme, your body can’t process this food item, this biochemical pathway is making a mistake at this point, etc.

Also, there are statistics out there for people faking. It’s pegged at less than 1% of patients, or in practical numbers, 6.8 patients per 100,000 patients. That is far, far less than people who struggle to get diagnosed.

https://www.ncbi.nlm.nih.gov/books/NBK518999/#article-25371_s4

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Lyx4088 t1_j5tcovx wrote

Seriously? Have you even bothered to look at the research? The clear answer is no because if you had you’d know my experiences and the experiences of people I know are fairly typical. If you still want to double down, feel free to check out my links below that reference studies on various diseases and how long it takes to get diagnosed. You’ll see what I described in my “non-representative” personal experiences is in fact very typical and representative of getting diagnosed with a chronic illness.

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Lyx4088 t1_j5tcdbm wrote

It’s not just me. Studies back up women take longer to get diagnosed than men for the same disease. By years.

https://www.webmd.com/women/news/20180607/why-women-are-getting-misdiagnosed

Many diseases just take a fucking eternity to get diagnosed properly.

Endometriosis is one that takes forever: https://www.yalemedicine.org/conditions/endometriosis

Autoimmune diseases can be really tricky to diagnosis and can take a ridiculously long time, sometimes upwards of 10 years for some people: https://creakyjoints.org/research/getting-diagnosed-with-autoimmune-disease/

The average time for diagnosis of a rare disease is 4-5 years, and during that time it’s often hell for patients: https://genomemedicine.biomedcentral.com/articles/10.1186/s13073-022-01026-w

And since I mentioned my own person story that you shit on in favor of anecdotal evidence from your doctor, narcolepsy takes on average 7 years to diagnose from symptom onset: https://narcolepsynetwork.org/about-narcolepsy/narcolepsy-fast-facts/

Do a tiny bit of research and you can see your bold statements about hypochondriacs and people being overly dramatic are dead wrong and your doctor is absolutely ignorant about what patients go through and likely part of the problem.

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Lyx4088 t1_j5sfhbo wrote

May you continue to be so blessed with your health you’re able to continue believing this. Medicine is constantly learning new things about the human body, identifying ways things go wrong, developing better testing and treatment, etc. Doctors are humans, and the sheer number of diseases out there coupled with unusual or atypical presentations means sometimes even diagnosable issues are missed far too long because it wasn’t on the doctor’s radar. Gender and ethnicity can absolutely play into this as well. Heart attacks can look different in women than men. Skin disorders can look different depending on the melanin in your skin, and it doesn’t always occur to a doctor to factor that in when they’re evaluating a skin condition. Despite having disorders with diagnostic criteria, sometimes the testing for them is garbage like with narcolepsy and idiopathic hypersomnia.

Personally? I spent over 15 years complaining to multiple doctors I couldn’t stay awake doing things like driving at night (because I’m not a careless idiot I avoided it to avoid hurting/killing myself or others), staying awake during movies, falling asleep in classes, struggling with insomnia at night, having weird episodes of feeling like a whacky wavy inflatable arm tube man, etc. It took 15 years for a therapist to go hold up this is not normal. Have you ever been evaluated for narcolepsy?? A sleep study and MSLT later and 15 years of why I can’t stay awake are explained. I literally had to find a sleep clinic that would do consultations and set up a study if deemed necessary because my primary at the time wouldn’t refer me anywhere despite having all of these symptoms and an epsworth score that put me in the severe sleepiness range. The evidence was right there and I was even given an appropriate screener that should have resulted in immediate referral to a sleep medicine specialist but got an eh I’m not too worried. Want to know the side effects of having fragmented sleep? Increased depression and anxiety symptoms, brain fog, increased sensitivity and less capacity to modulate pain, propensity for obesity, heart issues, blood pressure issues, and a whole host of other really problematic health issues. Sleep disorders are horrifically under diagnosed and can play a huge role in worsening and leading to other chronic health issues.

The testing for narcolepsy and idiopathic hypersomnia though? It’s shit. Two different sleep medicine specialists can read the MSLT study and come out with a different perception of any REM episodes, and the same patient can take the test on two different days and have wildly different results. It’s only within the last 10-15 years that science has learned narcolepsy type 1 (that is the one with cataplexy where people lose muscle tone experiencing sudden strong emotions because their brain triggers a REM state) is likely an autoimmune disorder leading to an orexin deficiency. They’ve known about narcolepsy for decades and have studied it for a really long time, but very little was known (and even less is known about narcolepsy type 2 let alone idiopathic hypersomnia), mediocre treatments to control the symptoms have been available, and there is still not a great diagnostic tool to identify it. And these are with specialists. GPs are rarely even looking for it or sleep disorders in general unless someone is complaining of snoring at night and being exhausted.

Did you know a symptom of hypothyroidism can be foot pain? It has to do with how the thyroid hormone impacts tissues in the body, but that foot pain can present at sub clinical levels on standard testing. Foot pain is a pretty common problem, but doctors rarely think thyroid related to it without glaring other symptoms. Very low vitamin D levels, which in the era of wear sunscreen and stay out of the sun to prevent skin cancer, can cause hellacious nerve pain that presents more similarly to other disorders. It took over a year and multiple trips to the ER with trigeminal neuralgia like pain for a doctor to finally test my sister’s vitamin D levels. They were critically low. She loves being outside in the sun and we grew up in a very sunny state. There was no reason for doctors to think vitamin D with her tan. Someone finally said let’s just check it anyway.

So yeah. Presenting with health complaints a doctor can’t figure out doesn’t mean something isn’t wrong. And saying those patients are being overly dramatic hypochondriacs diminishes what people are going through and how they’re suffering.

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