> The doctors were completely dismissive of and uninterested in the symptoms

I had exactly the same issue! GPs ran a few tests and couldn't figure it out. They labelled is as fibromyalgia, even though I didn't fit the criteria. I pushed to see a neurologist, who ran a few tests and couldn't figure it out - he also labelled it as fibromyalgia, even though when I questioned it he admitted he knew almost nothing about it!

There was a lot of back and forth, with GPs and neurologists being really dismissive. I forget how long this went on for, but a couple of years at least.

So I did my own research over a long period of time. I found only a handful of other cases, but with the symptoms I came to the conclusion that I must have small fibre neuropathy. I pushed the neurologist, who grudgingly did a nerve biopsy, which confirmed small fiber neuropathy. He stopped being dismissive after that.

For pain, I ended up with a similar situation. I tried gabapentin, pregbalin and all the usual things like topical capsicain, TCAs, SNRIs, diazepam, opioids etc. They either didn't help, couldn't be tolerated, or caused more problems. Within the public healthcare systems, the list was eventually exhausted, and they weren't interested in trying anything else. They didn't believe how bad the pain was, and were unwilling in any case to go beyond their list of standard treatments. In the end, I paid to see a private pain specialist, and eventually found ketamine to be really helpful - not just with the pain, but my mental ability to live with it.

I'm unsure of the antibiotics they give post LASIK if they ever do, I'm curious as there is a severe symptom some people get after LASIK called corneal neuralgia that can have similar system wide symptoms to small fiber neuropathy.

Was the cause of this an antibiotic? Could there have been any other cause? Did you have any surgeries or injuries around the same time the symptoms started? Did you ever have LASIK eye surgery?

Curious why you asked re: LASIK? Are the antibiotics given for that similar to what could cause the loss of myelin?

Thought I replied to this, odd. I don't know what antibiotics they may give after surgery. The reason I asked is some people develop severe corneal neuralgia that has/causes whole body symptoms - central sensitization, hyperalgesia - which sounds somewhat similar to small fibre neuropathy.

Yikes, thank you for sharing your experience! Sounds dreadful. What country is this in?

> topical capsicain

Is that what (and as painful as) it sounds like!?

> The doctors were completely dismissive of and uninterested in the symptoms -- it really shook my faith in medical practice.

I had a similar experience as a child, where a textbook case of a reasonably common disease went undiagnosed for 2 years by doctors before a toll booth worker at an airport diagnosed me. She recognized the symptoms because her dog had it. Sure enough, after my mother brow-beat a doctor into running the absurdly simple blood test she was proven right.

On the one hand, I want to chalk this up to them being like everyone else: 90% of them are just shit at their jobs. On the other hand, I have it on good authority from nearly every nurse I've ever met that doctors are indeed arrogant, dismissive, and often mistaken.

> On the one hand, I want to chalk this up to them being like everyone else: 90% of them are just shit at their jobs. On the other hand, I have it on good authority from nearly every nurse I've ever met that doctors are indeed arrogant, dismissive, and often mistaken.

I think there's an extra layer. Any public facing jobs tend to take a toll on you, too. Some more than others. With doctors patients lie to you constantly, for a variety of reasons. Some drug seeking, some simply not wanting to admit it.

Yea, i imagine they're like everyone else (shit), but i also imagine it is very easy become very dismissive in that line of work.

It's a fine line to know what to filter and what to ignore, i imagine.

I think the issue is more that the healthcare industry makes doctors gatekeepers to healthcare, which can breed tremendous amount of resentment between doctors and patients. A doctor is pressured/forced to provide service to patients, and patients are not legally allowed to seek healthcare from other types of professionals, like biochemists for example, which often have a much better understanding of some diseases than doctors.

When there is so much coercion and lack of consent, people get very frustrated.

>brow-beat a doctor into running the absurdly simple blood test

I feel like I see this story all the time: "a simple test found the issue that they denied I had".

What we should be examining are the incentives for the doctor to resist running tests. Are they too invasive? Some can be, but blood tests certainly aren't. Are they too expensive? Ah, there's the ticket. The doctors are either losing money on tests that find nothing, or they are getting berated by the managers for wasting money on tests that find nothing, or the insurance company is saying no when they ask to run tests.

We have the technology to have proactive medicine. We could be catching cancers in early stages all the time with some standard sets of annual tests. But the economic incentives are all out of whack, and we're waiting until the last minute to do these tests.

Many tests are simply not that good. It's not that simple, like pay $1 for a test that with absolute certainty tells you if you have disease X or not. It would be good if that was the case because then it WOULD have been just a question of money.

But if you have a test that is wrong 20% of the time, and you take this on all your patients every year, you will end up with a huge amount of mental suffering or possibly physical side-effects (unnecessary biopsies, or even surgery). You might end up giving people long runs of unnecessary meds. OTOH, you might end up missing some diagnoses if you don't do some tests. Balancing all of this is difficult.

Of course this is not news to the medical profession, this is a big input to the standard flowcharts. And you can always find anecdotal edge-cases that think their particular case was crystal clear and should have immediately been diagnosed. But don't assume that medical diagnosis and treatment is as trivial as doing a blood test and some googling.

> Many tests are simply not that good. It's not that simple, like pay $1 for a test that with absolute certainty tells you if you have disease X or not.

I will note that in my case the test is routine and reliable and has been since before I was born.

Sure you can't take every test at face value. How you approach the results of something that isn't 100% accurate is important. A potential false positive should mean a follow-up test, not a full diagnosis. Or even just holding onto the information until it can be part of a bigger picture with presenting symptoms. You don't even need to tell the patient what the results MIGHT point to, so you don't encourage hypochondria.

> We have the technology to have proactive medicine. We could be catching cancers in early stages all the time with some standard sets of annual tests.

I often wonder why such an expensive device as an MRI machine isn't utilized 24/7. I'd gladly go in for a scan at 3am if it meant paying even as little as 20% less.

The really strange thing about tests is even if you pay out of pocket you still have to get a doctor to sign off on it, which dramatically increases the friction and price for testing.

It's just information about your body. You shouldn't need a doctor's approval for that.

Doctors operate in an environment of extreme uncertainty, because human biology is so complex and so poorly understood.

At the same time, doctors are rewarded for acting as though they are certain.

Not unlike internet commenters rewarded with karma for condemning doctors across the board with certainty.

Humans crave certainty in an uncertain world.

The consequences of being wrong in the comments section is significantly less, imho. Plus, doctors are paid a lot for their expertise. It's really not about craving certainty. It's a question of a system that disincentivizes thinking through a problem that doesn't slot well into the diagnostic framework taught in medical schools to students selected for their ability to think inside the box, with little requirement, or really, possibility, to be very deep in biochemistry, pharmacology, research science, or a host of other inputs. Oh, and they're often very arrogant.

Doctors do save many lives but I fully agree a whole lot of them are indeed terrible at edge cases and what's worse is the arrogance they display when one tries to explain the symptoms clearly. Some of them go as far as recommending a psychiatrist when it is really not called for (sure, there are instances of hypochondriacs but how about the rest who aren't? ).

> 90% of them are just shit at their jobs.

As the joke goes, "What do you call the person who graduated last in his or her class in medical school? Doctor."

Funny joke but I really don't believe a good test taker does make a good doctor. It might in fact make for more arrogant doctors.

Real life impact of Dunning Krueger indeed.

Out of curiosity, was it Parvovirus? Somebody I knew dealt with a bout recently and I never realized how common it was.

Well done, tollbooth worker!

in my own experience (with my wife's chronic condition), most doctors are extremely dismissive if they don't have the answer off-hand. I don't know why this is - but reactions ranged from saying she was lying or was addicted to painkillers (despite not asking for painkillers) to switching back and forth between two common diagnoses even though they were quite clearly inaccurate. I have no faith in the front-line medical system to be able to deal with anything less blatant than a broken bone or a flu, if only due to what appears to be doctors' near-universal refusal to respond to uncertainty with humility and curiosity.

After many similar experiences with doctors, I have reluctantly come to the conclusion that about 80% are only interested in time preservation and ego preservation.

If they don't know the answer in 5 minutes, then obviously you must be crazy. 2 minutes, if you're a woman.

They are allergic to 3 little words: "I don't know."

There was a book, Bitter Pills, by a journalist who's wife had years long neurological side effects from a flouroquinolone, iirc. It's an investigation into the world of drug testing, prescribing, and side effects. https://www.amazon.com/Bitter-Pills-Inside-Hazardous-World/d...

I'm sorry to hear about what happened to your significant other.

I developed permanent neuropathy and muscle problems in my lower legs after a course of Levaquin for a respiratory infection. Constant fasciculations, cramping, and pain.

It sounds like you've done your research on potential treatments, however in case you're unaware, I've found considerable relief by soaking my lower legs daily in an Epsom salt bath. I can attest to the fact that magnesium sulfate is without question topically permeable. It may be something for your wife to consider, to see if it helps her.

Frankly, at this point it's pretty clear that the entire healthcare system in the US is parasitical: doctors, hospitals, insurance companies and pharma companies. Their purpose is to extract value, not restore health.

I have a very low opinion of doctors, who are by and large arrogant and of middling intelligence, a dangerous combination when a person's health is at stake.

>The doctors were completely dismissive of and uninterested in the symptoms -- it really shook my faith in medical practice.

This and similar comments here, and my own experience make me realize how elitism can be dangerous. We blame social media and propaganda for mistrust jn science (and rightfully we should criticize those) but part of the mistrust is a problem of medicine's own making. What happened to self-doubt?