[kranke155]

hopefully we will get somewhere with these studies. The lack of solid research on a disease that affects millions (likely a good percentage undiagnosed) is really tough for patients - and myself really, as I've found i likely suffer from this.

Finding out about autonomic dysfunction and small fiber neuropathy as I researched my own fatigue and finding out I likely have this has been very challenging.

[naturalmovement]

> as I researched my own fatigue and finding out I likely have this

Please don't do this. It's the medical equivalent of copy/pasting shit you don't understand from Stack Overflow.

Go see a doctor who has a degree and training.

[derektank]

As someone who has gone in to doctors for issues with fatigue, it’s incredibly draining (both emotionally and financially) to be batted around between a PCP and specialists that are unable to provide you with a diagnosis. I don’t blame anyone for just sitting down and trying to learn whatever they can by reading.

I agree with your general thrust of course, you’re much more likely to incorrectly diagnose yourself doing this than correctly, and walking around with a false belief is worse than walking around with uncertainty. But simply saying, “go see a doctor,” is rarely helpful. I’ve never heard of someone who tried to diagnose themselves without first presenting the issue to a physician.

[internet_user]

If you feel tired the treatment is almost always symptomatic: stimulants and wakefulness promoters.

If you sleep over 11 hrs per 24 hours: that’s pathological and they will be prescribed.

Fall asleep faster than X minutes? Same diagnosis, same meds.

Have apnea and yet still fatigued/sleepy after CPAP/surgery? Same meds.

Fulfill criteria for ADHD? Same meds.

Fatigue after TBI? Same meds.

Fatigue with MS? Same meds.

The root cause may or may not be eventually found, but there is no reason to get diagnosed with whatever is most useful to begin at least supporting treatment.

[ksenzee]

Autonomic neurologists are the relevant specialists. I invite you to look for one in your local area and see how rare they are. The last I checked, the Seattle metro area (and in fact the whole state of Washington) had precisely one board-certified autonomic neurologist. Diagnostic delay is, unsurprisingly, around six years. Combine that with the fact that all the equipment you need to do a basic POTS test is a pulse oximeter and a blood pressure cuff, and yeah, you're going to have people self-diagnosing, for good reason.

[kranke155]

I did see a doctor.

[ksenzee]

Oh sorry, I didn’t mean to imply you didn’t. If you were lucky enough to get a doctor to diagnose you before you figured it out yourself, congrats. That should be more common than it is. There are way too many doctors out there brushing off obvious signs of small fiber neuropathy.

[hombre_fatal]

If there's no test for it, then what is the doctor going to do for something as nebulous as long covid?

[internet_user]

Plenty of tests. Autonomic medicine is not nebulous, more often than not what’s happening is some homeostasis failure/some peripheral nerve thing/brain damage. At the very minimum.

Widespread issues all over the body without readily obvious organ damage is nearly always nerves/brain.

99% of physicians wouldn’t know what to do with specialized test results anyway, even if they’d know what/how to order in the first place. Internists don’t know how to read PET scans, radiologists don’t know anything about homeostasis. general radiology cant even read head&neck scans, you want a specialized radiologist for that. geneticists don’t have the slightest idea about how to read nerve studies, which is actually a completely separate certification, not even every neurologist has it or does them.

Medicine is the game of super-specialization.

And nobody wants to bother to try to piece it all together for you. Very few MDs are actually able to, in the first place.

Ideally, you have a very broadly competent internist to figure out what direction to even start digging at, and then find the sub specialist who has the expertise AND interest in that area.

eg NIH’s section on neuro cardiology recently closed because this one dude who was REALLY into simply was too old, couldnt find a replacement or build a bigger lab that could sustain itself and retired.

At times you need a specialist trained and practicing in two different specialties: eg ENT + neuro, for example. Those can be hard to find. Neuro cardio more common especially now.

[kranke155]

There are tests for it. SFN biopsy, tilt table, ETT.

[kranke155]

I did see a doctor. I’m mid diagnosis / testing.

[zx8080]

It's probably more profitable to treat symptoms.

[jambalaya8]

Hard to treat symptoms with immunological conditions. I mean, there are vitamins and supplements, but noone is gonna generally hand out economy-sized bottles of controlled substances for exhaustion, etc.

These sorts of conditions are systemic, and the causes and ways of dealing with the accompanying syndromes are probably always going to be different from individual to individual (well, likely the exact physiological causes anyway).

[PaulKeeble]

So far all the trials attempting to do so have failed. Its not that people aren't trying this, it just doesn't work for most of the symptoms.

[J0nL]

It's true, this is why there are so many government agencies focused on healthcare. The medical field lacks a healthy profit motive. Healthcare CEOs use their fiduciary responsibilities as an excuse and say they'll get sued if they don't exploit situations.

There was a SARS vaccine as far as back 2016 which could have changed everything but was ignored. Pharmaceutical execs told them they were, "waiting to see if it comes back yearly" first