[burritas]

I'd rather not go into personal detail but I share a similar experience. The thing that really drove it home for me was when I got back home and was telling my own doctor about my experience dealing with family in the medical system and she said I was mistaken or there was a misunderstanding because that kind of thing doesn't happen. I asked why she was siding with a doctor she'd never met before instead of listening to her patient, which got her pretty flustered. I don't see her anymore.

[the_sleaze_]

My own father passed roughly a year ago as well, also at a particularly advanced age. I had a similar experience, where I became frustrated with the lack of what I perceived to be care. As in "give a shit", or even a desire to find an actual diagnosis. One doctor told me, as my father lay intubated a foot away, that [the Dr's] best gift he gave his own parents was to DNR them so they never spent a day in a nursing home.

A year later I've realized that my father was 80 years old. We all have to die at some point. Your father was 87. I understand you're upset. It may be that there was more for the medical system to do, there may not have been.

At what point does spending possibly millions of dollars to extend some one's life 1 year, 2 years stop becoming good and turns into actual harm?

They have to go at some point. Even if it is someone else's fault.

[benatkin]

> It may be that there was more for the medical system to do, there may not have been.

I think you're mistaken if you think bane's complaint goes away if it turns out they couldn't have saved him. For one thing, bane said his father refused treatment, but still had a complaint with the hospice. The complaint with the hospice probably wouldn't be that they didn't save him from succumbing to his illness because that's not what the hospice is tasked with doing. When someone has a terminal illness and refuses treatment what they are supposed to do is provide care while their illnesses kill them. They are to provide needs so other things don't kill them, not kill them earlier or make their conditions worse with laziness or incompetence. One example of something cancer shouldn't cause is bedsores from not being moved out of bed periodically. From how bane wrote of it, it seems like they were very far from any reasonable standard of care, so it would be hard to say what specifically would have gone better with his father's physical and mental condition during his months after diagnosis.

As far as bane's father's diagnosis, I think it's likely if the medical system had worked harder to diagnose him they could have.

[jacquesm]

The one thing that every doctor should have happen to them is to go through the medical system as well for something non-trivial. That usually gives them a lot more perspective on the reality of being on the receiving side.

[speakfreely]

I don't think they can have the same experience as they are "insiders" to the system. Doctors and their families don't wait for appointments for months, aren't the last ones checked by the nurses in the hospitals, and get a variety of preferential treatment that makes their experience completely removed from the reality that the average person experiences.

[toomuchtodo]

Some doctors have a more healthy relationship with death than others.

https://www.huffpost.com/entry/doctors-death_b_1500871

https://www.theguardian.com/society/2012/feb/08/how-doctors-...

[inamberclad]

It's a common theme - doctors just don't listen to their patients at all.

[jacurtis]

I'll share another story as an example. Late last year I started having trouble swallowing. It started as a discomfort, and eventually turned into trouble breathing and inability to eat solids. I went from perfectly healthy (literally ran a triathalon two months before this, and a marathon a few months before that) to unable to eat solids and bedridden within ~3 weeks.

I visited the ER a total of 5 times during those 3 weeks (having never visited the ER one time in my previous 35 years of life). Each time I was told to go home and rest. I received no care. I was unable to stay awake for more than a few hours and eventually became unable to talk and too weak to walk. I was unable to talk, eat, stay awake, and even drinking water was miserable. I lost 30 lbs in 1 month. I had to go on disability from my job (Site Reliability Engineering Manager). Life was so bad.

Over the course of the next 10 months I visited a dozen different specialists. Most of them weren't even worth the copay. A lot of doctors are absolutely worthless. I did eventually build up a team of talented and caring doctors. But 80-90% of the doctors I saw had zero care of my wellness. I am 35 years old, 6 ft, 180 lbs. I am very healthy. I eat tons of veggies, i don't do drugs, I drink rarely (socially a few times a year).

The specialists continued to rule out specific diseases within their respective line of specialty, but they kept suggesting I rule out more general stuff from my Primary Care Physician. But my primary care doctor would continue to shrug off suggestions I had and tests I requested. The fact that I had researched things on the internet would ensure that he wouldn't want to encourage it. He would shrug off symptoms telling me they were irrelevant or that I just had to deal with them or that its just part of me "getting older" (i'm only 35...). I had asked for basic tests like a metabolic panel or other broad tests to give us somewhere to look and he truly didn't care. He just wanted to send me to a different specialist and have them worry about me.

After 10 months of this I found a new primary care physician. I explain my symptoms to him and he truly listened and cared for the first time since this whole thing started. He listened to my actual problems and the timeline of the events and within one visit he took a bunch of blood and sent off for a host of tests. Within a week of that visit I discovered I had severe Vitamin D deficiency and B12 deficiency. I took vitamin supplements for these two vitamins and within a week I was about 50% better. It took about a month and I was about 80% better and another month and I was 95% better.

The cure to my disease was $20 worth of vitamins that you can buy at a corner market. I was on disability, I actually came close to dying a few times and racked up $150,000+ in medical procedures (luckily I have amazing insurance so it cost me my out of pocket max of $3,500). All of this for what was cured with vitamins and a simple blood test. A single visit from a caring doctor found this problem, but I suffered for a year because I couldn't find a doctor that cared enough to actually listen and take me seriously.

The stickler is this. I wondered about a vitamin problem at the beginning and my original primary care physician told me specifically not to take a multi-vitamin because "it might make things worse". I had also explicitly requested a general vitamin and metabolic panel on my first visit to the emergency room and also on my first visit to the PCP, of which I was denied both times. I even specifically mentioned a vitamin B12 deficiency during my first visit with the PCP, but when he asked why I suspected it and I mentioned that I read about it on the internet and my symptoms matched up, he was determined to convince me that I was wrong and it couldn't be that.

Not only did I effectively lose a year of my life and career and thousands of dollars. But I still might have some lingering permanent effects from this. Nothing like what I went through initially, but still lingering issues nonetheless.

The lack of compassion or care in the medical community astounded me. I have been very healthy my whole life and haven't had to deal with a lot of doctors. I always looked up to them as intelligent and respectable people. But this experience really gave me a more cynical experience of them. I realize they are just shooting from the hip and guessing as much as anyone else. Yes they went to medical school and have that knowledge to fall back on, but they are still just guessing. They just want to get you out the door, just like when you have someone come into your office to talk about something. You want to make that person happy, but you also just want to get them to move on and stop bothering you. Most doctors have this same approach. You are a customer, and most doctors don't truly care about you more than that. They don't see you as a person with a life, who may actually die from these decisions you are making or make have serious repercussions (like taking disability off work or suffering daily).

Yes, i'm American. So this is the American medical system I am talking about. But I doubt it's really that much different elsewhere in the world (minus the outrageous prices).

[smeej]

This reminds me of the old joke, "What do you call the guy who graduated last in his medical school class?" "Doctor."

I went to school with many people who went on to become doctors. I can say with confidence not one of them is inherently better at researching, learning about, and coming to understand something than I am.

I didn't choose to go to medical school. They did. But if I'm going to dump thousands of hours into researching what's going on in my own body, I will know more about my body than they do. The fact that I found another subject more interesting for my graduate degree doesn't mean I'm incapable of learning what they did, from first principles if necessary.

I get why they're tired of having to address everything someone says they found on the internet, but we're not all idiots out here.

[nickd2001]

"So this is the American medical system I am talking about. But I doubt it's really that much different elsewhere in the world " - from personal experience I would claim its a lot different in systems that aren't motivated by money. Its not just the lack of high cost, its the ability of medics to be 100% focused on clinical need rather than money. In my case, I got an issue looked at whilst in the USA. Got sent possibly to the wrong specialist who completely failed to diagnose the problem but was to my mind arrogant and unable to see where their knowledge ended. Eventually back in UK got it sorted on the NHS, the consultant was honest and humble, he started with, "I really don't know what this is yet but we can whittle it down by doing this check and that". In the end, after a few false starts doing the simplest checks first, he methodically found the problem and sorted it. Been fine since. Of course sadly the NHS is now on its knees due to deliberate under-funding by current UK government who would love to privatise the lot. But I'd argue , everyone needs to fight the so-called "American model" of healthcare which other countries are trying to copy. I don't believe profit motives and treating ill people, work well together, at least not in most cases.

[brandonmenc]

> I had asked for basic tests like a metabolic panel or other broad tests

You researched the internet for a whole year but never found out that you can just pay someone like Private MD Labs [0] a hundred bucks and get this done yourself?

Sorry, but I'm skeptical.

[0] https://www.privatemdlabs.com

[n8henrie]

If you're comfortable sharing, do you have some kind of severe dietary restriction? Do you spend a relatively normal (at least for HN) amount of time outdoors? This sounds like a very unusual story, I would be concerned about some other underlying pathology. I'm glad you're doing better!

[justinclift]

Out of curiosity, have you spoken with that idiot primary care physician since, to let them know how you were cured? ... and to do the whole "fucking told you so!" thing? :)

[NumberWangMan]

Holy cow are you me? I haven't had as bad an experience as you either in terms of symptoms or medical care, but I'm hoping that right now I'm turning a corner, having started supplements of both of these and am feeling a lot better.

The weirdest things I've been through were uncontrollable muscle spasms and numbness on half of my body, in various places. I had shingles a little while back and it seems like that side was affected more by the nerve issues. I've had a lot of anxiety about strokes, but I'm finally starting to chill out about it. I've only lost 10 pounds from the digestive issues, luckily, though I was already on the thin side.

My D is already tested as mildly deficient, and B12 I'm getting myself tested next week (the most sensitive tests you can get, Homocysteine and Methylmalonic acid). But the drastic improvement I've felt while increasing my B12 intake has been pretty telling. I think it's helped a lot more than the D supplementation, which gave me a bit more energy but didn't do much for the really bad symptoms.

I'm vegan and was actually supplementing B12, about 250 mcg per day. I thought that was enough, but my current theory is that I've just been getting barely adequate intake given that my digestion isn't always great, and the recent bout of shingles I had combined with some anxiety about unrelated life stuff pushed me over the edge. Then I tried taking a bunch of B12 one day just in case that was the issue, and felt absolutely awful -- which I unfortunately interpreted as "B12 caused a bacterial overgrowth in my intestines" and not "My nerves are damaged and started to repair themselves, and my brain is getting temporarily over-stimulated with sensation". I think the latter was what actually happened, but because I believed the former at the time, I stopped my B12 for a bit and that did not help. I thought I had enough stored in my body that skipping a while, then resuming a reduced dose, would be fine.

For about a week now, I'm taking 1500 mcg per day split into 3 doses, which is supposed to let you absorb a lot more than a single dose (though still only a tiny fraction of what you take, maybe 6-12mcg instead of 2-4, as a wild ballpark). The biology behind B12's dose-absorption curve in pretty interesting. Your stomach lining produces a chemical called "intrinsic factor" which B12 has to bind to to be absorbed, because it's a big chunky molecule that has a really time passing through your intestinal wall alone. Once that intrinsic factor is all used up, you have to wait a while for more to be produced. But if you take a TON of B12, some of it does manage to get through by chance, even if not bound to the intrinsic factor.

Funniest/scariest thing that happened to me was just a few days ago, when my jaw started opening like a yawn, repeatedly, and uncontrollably. I could only get out a word or two before my mouth would open. The morning after getting checked out to rule out stroke (hooray, another ER visit), I realized that I had started yawning again after not really being able to yawn for a long time, and not even noticing it as a thing that might be related to everything else. I think that was the nerve that controls yawning waking up and getting a bit over-excited. It eventually passed after about an hour.

As bad as this has been for me, I've been very lucky to already have been interested in nutrition and had enough background knowledge to figure things out after only a couple of months and without my symptoms getting too bad. (assuming I'm right, that is -- I'm reasonably confident but I'm trying not to get my hopes up too much).

I can't imagine what it would have been like to go through what you went through. I'm glad you eventually figured it out.

I think a big problem with B12 deficiency is that the symptoms are varied and often vague enough that all sorts of folks who don't know what they're doing have latched on to it, and people often self diagnose with it incorrectly, possibly delaying a correct diagnosis. I wonder if some doctors have just seen too many people who do this (but maybe I'm being too charitable). Yet it is a real and deadly serious issue, and the standard guidance on it is maybe a bit out of date.

[tekknik]

The interesting thing I find is with COVID vaccines. How many people were lambasted for not listening to their DR?