So in the past 4 years, I've had 4 separate health issues crop up one after another. At first, I tried to get them sorted out but not really that seriously. I half heartedly addressed the first 3 but I tend to ignore things and focus my energy on the entrepreneurship rat race. But the last issue was not only super debilitating but in combination with the other 3 has destroyed my quality of life and ability to function.<p>So I started doing what I think a lot of engineers would do. I tried to find the bugs in my body. I would come up with a theory, run some tests, then rule things out one by one. Of course there's only so many tests you can do at home or through Quest (and I'm not a doctor), so I still need doctors' help. That's when I realized that the way engineers, mechanics and House MD solved problems is not how real doctors solve problems.<p>Just a random hodgepodge of problems I'm having:<p>1. I feel like I have to do as much reading and thinking for myself since nobody is gonna be a bigger advocate. But also, I have to be coy and pretend like I didn't in case I accidentally slip a piece of medical jargon and they start thinking Im a webmd hypochondriac.<p>2. I'm not confrontational and doctors are trying to get you in and out. So people say you can try "getting tough" with doctors by asking for written reports that they chose not to run a test, or by using "keywords" like, "what's your differential diagnosis". But my gut has never agreed with going that route. I don't think I can get to the bottom of this with anything but an ally. I can't imagine combatting my way to success.<p>3. I've seen people mention the rare disease centers (https://news.ycombinator.com/item?id=34549162). But I don't think what's going on each on their own is serious enough that I would be accepted. I just don't foresee my shit luck going in my favor<p>4. Every specialist sticks to their lane, and don't want to deal with other issues. But everything (especially in my case) seems to be connected. Am I supposed to just ignore everyting and deal with them with blinders on even though I suspect the connections?<p>5. I read that it's better to be specific and have objective data so I spent 2 months gathering data, then showed up one time with a time series and correlation to prove it's not in my head. I have not really had luck with this tbh because I think I just come off as a tough patient and a "braniac"<p>6. I have a friend who is very type A who got to the bottom of his issues but had to see 9 doctors before landing on a seredipitious diagnosis. I don't know if I have the fortitude to go see 9 doctors. With specialist appointments 3-6 months booked out, and every single visit increasing your chances of being labeled a difficult patient, I literally feel so dejected attempting this. My one track ADD mind that is great at groking code non stop is not great at following up on multi month, on and off scheduling and bureaucracy. Not to mention that this would be a full time job and I don't know how I could balance that and a dayjob.<p>What I really wish existed was some sort of Tim Ferris style book with actionable tips and tricks to navigate this mess from the perspective of a chronically/mysteriously ill person. So I kind of wanted to get a discussion going for anybody else too who's in this situation and maybe we can share some info :)
Sorry to hear you're very much under the weather.<p>I'll echo what has been said already - you need to find an area to ask, but IMO, not necessarily any speciality place - people tend to, given a hammer, see only nails. [Somewhere anonymous]<p>More often with weird strange problems, it's been other people, including at times nurses, pharmacists, who've nailed down what the root cause was.<p>To often disease will affect kidneys, liver or other organs where many similar symptoms result and makes it hard to tease out if they are significant or not.<p>Possibly your problem could be complex ... or it could be all from one little problem that no one has picked up on.<p>When I was in the first few months of my worst chronic problem, and I by pure chance happened to phone on some incidental matter, a guy who'd been bed ridden for near 20 years continuously and just been diagnosed and not long returned with a new lease on life - but his own family had for many years prior, regarded him a lay about, lazy and a bunch of not so pleasant terms, as doctors had told him it's in his head (disclaimer Aussie GP docs here, one can often get way more attention span from a child with pronounced ADHA - well my experience of them up in the Northern regions.) Turned out to be simple, 20 years he'd had a very resistant infection from the tube that drained the kidneys, and I guess <i>usual</i> testing didn't reveal it, but being what it was though the cure was a hospital stay while they pumped the adequate amount of drugs to kill it off properly.
So a few pieces of advice from friends in healthcare:<p>1. try to mention keywords to know how bad the condition is affecting you. If you're vague they don't know just how bad your situation could potentially be. Apparently saying "homebound" could be key for me since despite the medium nature of my symptoms, the combination of them all has effectively kept me homebound. The other big problems drs care about is affect on fundamental biological processes, like heart, breathing, eating, vision, sex etc...<p>2. Go prepared to appointments with data and history with dates. I've been told doctors appreciated patients that take their disesase seriously and are organized. (yet to work for me lmao but I think it makes sense)<p>3. Focuse on the top symtpom and maybe up to 2 others, but don't bring too much up or else it could be too messy and the doctor will be annoyed by too many things going on. They have a limited window to discuss things<p>4. Since the appointments are so far out, unfortunately to get the best chance possible, that means making appointments for several doctors at the same time and cancelling if you don't need it anymore. But this was what a friend did. He interviewed the doctors and rejected drs that would not listen or was not willing to work with him.<p>5. I've had great luck just running tests myself if I want to pursue a theory. There seem to be several companies that are gateways to quest diagnostics blood test centers. It's dirt cheap (in time and money), and you can show up next day and get the results digitally. I know drs probably frown on this but I can move quickly and trade tiny amounts of cash (less than a copay usually) for quick answers. <a href="https://www.ultalabtests.com" rel="nofollow">https://www.ultalabtests.com</a>
What your best outcome from doctors? Wildest fantasy "you're cured!" aside, what's the best outcome you could expect? Figure that out, and then look at it with cold logic and ask why you need a doctor to help you get there.<p>Dealing with the practitioners of medicine and the systems in which they are enmeshed is a full time job by itself. Sometimes they are gatekeeping tests or treatments and you have to deal with them... I've given up on that, myself. Last I heard was "that sounds logical but you can't afford to be diagnosed with that" so that means the medical system has nothing further to offer me.
Don't know what mysterious medical problems you are having, but my guess is that you are not so unique. Other people might be out there that have the same or similar combination of symptoms. My first step would be finding that group. They will likely have online forums, advice about doctors, tips of what might work, etc. Then the next step is filtering out bullshit from helpful advice.
It took more than 30 years; I was in a terminal nursing home; I had to leave my country in order to survive; it was finally defeated through pure luck; and nobody will ever know exactly what it was.
But now I'm ok.
Sheesh.
My recommendation would be to try switching to a direct primary care provider. It's probably the easiest way to get away from over-financialized five minute doctor visits.