It feels like we are barely out of the dark ages when it comes to medicine.
My brother died at a fairly young age (30s) because nobody could figure out what was wrong with him over the course of a couple of years. Specialists investigated a lot of diagnoses. I don't know if it was rare or they just missed things or what. We'll never know if they could have done more or not. I heard many variations of "why can't these useless people figure this out?" And I have wondered if the answer is that, for all the advances and modern technology, we're just not that good at medicine yet, not really.
People like to think that some X has the perfect answer to any problem we might face, but in fact we don't have answers to very many problems.
The ability to solve various problems is not binary.
On average we have progressed tremendously over the last 200 years, say. That means for many diseases, we have made extraordinary progress, as evidenced by life expectancy.
At the same time there are many diseases where we are simply touching the surface and have a very basic (maybe even incorrect) understanding. An example that comes to mind is we still don't know why we sleep. We have good guesses, and we are excellent at observing sleep and curing many related diseases. But why do we spend 1/3 of our lives asleep? We don't know.
In other words, progress is not distributed uniformly over diseases.
(On a different note, the dark ages weren't actually as dark [1].)
Then there is a difference between the life expectancy counted from birth, or counted from 18-20+ yrs up.
Pharmaceutical drugs are a very poor way of treating the body. Expecting consistent results from it is a losing proposition.
Sorry about your brother..
I realized on my own that I met the criteria, but the first few doctors I saw wouldn't listen to me, even after my arm popped clean off my shoulder. now I have an excellent care team, but it took me a couple years of fighting to get a diagnosis.
It's like these people learned a subset of their field and then just refuse to ever learn anything new.
It's completely obvious that the doctor isn't going to really read the paper (he's too busy). You just present a paper and suddenly the doctor will trust you more. Literally it's deference to Authority being employed by the doctor here; nothing going on with rationality or logic.
Don't present a single logical argument to the doctor. If that argument, however logical, goes against traditional medical knowledge you will be dismissed. The key is to forget about logic and use an authoritative approach.
I'm betting the actual contents of those research papers don't even matter. You can print out a completely bogus study, just make sure it looks legit.
There has to be some degree of verification regardless of how complex the world is. At the very least he should read the paper. Because not doing so is hypocritical. Doctors treat patients as dimwitted idiots but suddenly the patient is smart because he has a paper? No, you can't make that judgement unless you read the paper.
What the mother did here was more rational and logical then every doctor in the department of UCLA. Think on that, then think about the amount of money UCLA charges patients and whether or not this sort of incompetency justifies this high level of monetary compensation.
I would say all people are irrational and biased. The issue is Doctors in general think they're better than everyone. They dismiss the fact that the biases and crazy ideas that effect all of humanity could effect them as well.
He also went through and dismissed most of the more worrying possibilities, which set my mind at ease, and narrowed it down to a more likely condition.
So basically, I threw in a bunch of options and most of them were wrong. Thankfully I didn't walk in convinced that any one of them was absolutely the cause, but I imagine some patients do, and it can be a pain for the doctor.
B) Just like IT Support, doctors abilities are distributed on a bell curve. We all hope that the curve is leaning to the right, but I think the jury is still out on that one.
What makes you think that they are filtering for good physicians? Or even filtering for those who are capable of becoming doctors?
Here in South Africa, post-1994, universities adopted a very aggressive affirmative action policy to correct imbalances of the past. While med-schools had previously been based purely on merit, post-1994 introduced quotas for each of the major race groups.
This meant that a disadvantaged-background student with a C average would often be picked over an advantaged student with an A average.
The result was still doctors who graduated, and then went on to practice. The restriction by med-schools everywhere is not because only high-performing students will survive it, it's a purely artificial restriction.
After all, if C average students pass, why not simply increase the intake?
Think of it this way; in Europe it is far easier to become a doctor then in the US due to significantly less stringent requirements. However in Europe and other 1st world countries treatment and other quantitative measures on quality of medical care beat the US by a far margin.
It shows that the "unpleasantness" is pushing something to the right of the bell curve. However it is clearly not pushing "effective medical diagnosis and treatment" to the right of the curve as Europe is beating us on that front with far less stringent requirements.
[1] It's supposed to be legally limited to 80, but ask around and it's obvious that even that limit isn't properly enforced.
The big problem is that 2 is true.
In fact, education and medical systems are different enough between Europe and the US that saying one is harder is very subjective. For instance, american specialists are really hyperspecialized. They often excel at what they do, and are completely ignorant of other fields. Europeans often have a much broader medical knowledge. They are also far less aggressive. All in all, I much prefer Europe.
Either way if you're saying the "hardness" is the same, the conclusion still stands. "Hardness" is not the metric that is making European quality of care better than the US because both countries have the same "hardness".
It sucks, but as with any human system, the majority has priority, minorities have to wait for their turn (and/or actively fight for it).
Have a weird condition? Sorry, but most of the time you'll be out of luck. And there isn't really anything planned in our healthcare systems to help you. And frankly, people coming into my practice wielding science papers often understand neither what they read, nor that they are asking for an impossible thing. The best I could do if your claim seems realistic is to refer you to a specialist in the matter, but never ever would I act solely on the basis of research papers. And that's because I am a researcher myself, so I know how unreliable that is.
I think you're right that most doctors don't do research, but doctors publish papers all the time. if I look at a surgery journal I'll see articles by surgeons. my doctor isn't like, in the lab running tissue assays, but he'll try experimental things when no clear-cut treatment exists, see if they succeed or fail, and adjust his practice accordingly.
also, dismissing people with "weird conditions" as "out of luck" is a pretty crappy thing to do. I can understand not having enough time or background to handle those cases, but I sure hope you're referring those people to someone who can rather than giving up on your patients because you can't be bothered.
What people don't understand is that modern medicine is not centered around the practitioners but around precise guidelines that are both medically and legally binding. When I say that you're out of luck, it's not to spite anyone. If a competent clinician specialist examined a case and sees no way out, going to the big fish professor will not benefit you otherwise than maybe entering a study, because from a reasonable clinical pov there are really many conditions for which we can only offer support.
So sometimes, no one "can". But clinicians are not expected to use creative thinking, and that's the very best medical evolution since the past century. It's the job of researchers to read science papers and formulate the guidelines to be transmitted to clinicians. You REALLY should not be doing that all by yourself as a practitioner.
I’ve never had a good experience with an endocrinologist.
Eventually, he started compiling his own bloodwork and measurements in an Excel sheet and could correlate the severity of his symptoms with the red blood cell count in his blood, but was rebuffed every time. After urging from us, he finally asked to be referred to a different specialist, and one of the first things he asked her was: "can my symptoms be explained from this blood work?", and he was very happy and relieved when she said yes.
In all, it took ten years after his first symptoms to be diagnosed with MDS [1]. He's gone now, but at least his last years were better than the ten before that. To this day, we don't know if his bypass surgery was a necessary intervention.
As a bonus, by arrogating the exclusive right to drug prescription and analysis to themselves they can charge what they want.
Man deserves true freedom. To self diagnose if one so desires, to kill oneself through incorrect prescriptions if one so desires.
People foolishly say “If only the doctors would see my illness as an illness” not realizing they exist in a false prison. Doctors should not stop you from treating yourself. You are sovereign over your body. Never let them rule.
The thing is, none of the rules you mention exist to stop patients from doing anything. Rather, they exist to protect desperate patients from con artists selling (sometimes literally) snake oil "cures".
I'm reminded of accredited investor rules -- which also chafe at times, but are equally essential for protecting people from scams.
To give an example: in my country, 56% of people have already medicated with homeopathy (a known scam for decades). Imagine if they could just buy any other medication, which unlike homeopathy, could have strong secondary effects ? Those 56% people who have "illnesses" with very benign symptoms that for most cases cures itself in a couple days without any drugs (homeopathy is used for anything, common cold, headaches, itches, you name it ...), now they're potentially taking much more dangerous meds. So it's clearly not equivalent as 56% of people definitely don't have "faint-at-the-wheel" symptoms today.
Personally, I've been diagnosed with Gilbert's Syndrome. Which is basically "your liver doesn't fully process dead red blood cells, you're one of the people where it just be like that". It's not a severe condition - I just get a bit yellow sometimes, but a diagnosis of "it just be like that" is not really a diagnosis, is it? The real diagnosis would be "you have such and such gene that causes such and such enzyme to not be synthesised in the required amount leading to your liver not processing bilirubin". Obviously most people won't need or want a diagnosis that detailed, but why not let those who do want it pay for it? Let me pay you to take better care of my health...
Some days I feel great, some days I’m virtually incapacitated. Hundreds of tests and years of specialists later we have found an assortment of minor things but nothing that really explains it. I’ve even entertained the idea that it’s all psychological but years of therapy have given me techniques to control the panic attacks, but not stop the physical sensations that kick them off.
I have abdominal pain, headaches, high blood pressure with periodical orthostatic hypertension (my blood pressure goes up in the standing position; it is supposed to go down), tremors, tachycardia, fatigue, difficulty concentrating, constipation or diarrhea, severe sleep disturbances, muscle spasm and cramps, hot flushes, cold hands and feet, and I have some episodes of euphoria, panic attacks and paranoia. Same as you I have some days where I feel just fine.
I have had the same experiences as you when it comes to doctors, they do a lot of tests, the tests come back inconclusive and then they just shrug. At least I have a nice GP that says that he has no clue what is wrong with me but that something is definitely wrong.
So far we have done a lot of blood work, various urine and stool samples, CT-scan and MRI of abdomen. The only thing they have been able to find so far is slightly elevated noradrenaline/norepinephrine levels (three times) and some cysts on my left kidney.
The elevated noradrenaline could be because of a pheochromocytoma (adrenaline producing tumor), but when I have done the 24-hour urine test for that it comes back negative.
The only thing that I have found to work is to eat a low tyramine diet which seems to greatly reduce the symptoms, though not completely remove them.
It might not be the same as you are having problems with, but I do see a lot of similarities.
My email is in my profile, let me know if you want to compare notes.
I will try to reduce dietary tyrannies - that is a good idea.
1. Unlikely but testing for sleep apnea, just to rule out since I’ve heard people with strange constellations of symptoms find improvement this way.
2. Testing for neurological autoimmunity - a paraneoplastic panel, neuronal antibody panel, anti-nmda receptor. There are a number of panels depending on the lab for these with some overlaps between them just check what they cover. These can be hard to obtain you need a doctor who groks them. Also can be expensive and sometimes difficult to have insurance cover but that’s usually helped if the doctor groks it.
3. A small fiber punch biopsy. (See Therapath for info, may also find a talk on YouTube called Small Fibers Big Problems by Dr Oaklander)
4. Investigate ME/CFS (probably already have) and dysautomomia (autonomic neuropathy, possibly indicated if biopsy positive).
5. I’ve just put my email in my bio. If you’re US based and want a recommendation for some helpful neurologists who can look for this stuff send me an email.
My feet are fine, so it can’t be SFSN, right?
I’d love a recommendation for helpful neurologists. Will send email. Thank you!
Sounds like it could be something like Celiac disease.
From what I've seen, most of those are potential Celiac symptoms. But I imagine other autoimmune diseases could also cause these types of symptoms.
This graphic [0] shows some potential Celiac symptoms. A guy surveyed a bunch of people with Celiac for their symptoms and listed the symptoms given more then once. The orange ones are the most commonly given and many of your listed symptoms would fall under the orange ones.
The abdominal pain is especially what makes me think it could be Celiac vs. other autoimmune diseases or something else.
[0] - https://glutendude.com/wp-content/uploads/2021/02/celiac-dis...
I actually am getting ready to move back to where I lived before I got sick on the off chance that that helps.
https://www.bayarealyme.org/about-lyme/lyme-disease-facts-st...
I have something wrong with me. I’ve spent many years of my life trying to figure out what it is. But never fully have - it’s sick, but it seems like most doctors operate under “you have symptoms, I order a few tests, they were negative, guess we’ll never know, fuck off lol”.
It sucks. I hope these families make progress.