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.
Is that what (and as painful as) it sounds like!?
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.
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.
When there is so much coercion and lack of consent, people get very frustrated.
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.
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.
I will note that in my case the test is routine and reliable and has been since before I was born.
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.
It's just information about your body. You shouldn't need a doctor's approval for that.
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.
As the joke goes, "What do you call the person who graduated last in his or her class in medical school? Doctor."
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."
This is too accurate. Our medical system treats women as a minority or nonstandard patient. This is crazy when women are actually a slight majority over men. Usually around 51% of the population.
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.
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?
The doctors were completely dismissive of and uninterested in the symptoms -- it really shook my faith in medical practice. We were on an oddessey to determine what was wrong and could be done to help. It took her 6 months to resume walking more than a short distance. She still has foot and hand problems from permanent neuropathy that affect her daily.
A few years after, Levaquin was black-labelled, and I believe no longer the first line of defense for children at least. The whole thing still burns me.
I suspect this sort of information is no longer rare but if anyone is having this experience then a GABA agonist like benzodiazepine may help you, but be extremely careful as they are quickly dependence forming and must be weened. Small dose.