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I have a certain (abdominal) chronic medical condition. I've been to several doctors over the course of the last years and nothing could be found -- I'm completely healthy, according to all my tests. I am not asking for personal medical advice but if there is, in general, anything I can do besides seeing doctors who don't find anything.

Are there reliable online sources where I could explain my condition at length and perhaps someone would have an idea? If I get any sort of plausible suggestion, I might be able to talk about it with the doctors and see if it makes sense. I'm not looking for alternative medicine or things which are not scientifically established. I just want to make sure my doctors haven't missed anything of value that could be related to my condition.

I'm willing to accept that there are some unidentified chronic conditions for which there is no cure or identification of cause, but I'd like to know I've exhausted all my possible options before that.

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    How many doctors have you visited? In general, when 1362 specialists examine you, everyone overlooks one bit of the bigger picture. I would encourage you to - whenever you visit another or a new doctor - bring along a hard copy of examinations and results done so far. As of right now, I'd probably consult my general physician with this. It is a valid question and they should be able to offer you some sort of advice, better then what we can do here because they know your medical background, and they know you.
    – Narusan
    Aug 16, 2017 at 13:50

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I am so sorry you are not getting answers. It is very frustrating to seek help and find no relief and no explanation.

Where I live, about an hour from me, is a doctor that is rather unusual but specialized in differential diagnosis. She works in a large compound of her own in the middle of nowhere and all she does is diagnose & then recommend your options. She takes patients only on a retainer and last I knew it was pretty high, like $5000 USD. I have to think she cannot be the only gifted diagnostician out there. I found her asking around in the alternative medicine community about medical doctors that others knew of that might be of help. She is not alternative. She is simply someone who is not within the normal scope of who I might get referred to as she isn't covered by insurance. She didn't just take my money to see me and then charge me a ton more. The retainer covered a lot of things, labs, tests, visits, etc. I believe I saw her about a dozen times (all covered) and she spent 3 hours with me on intake, just asking questions, checking me over, etc. Getting a differential diagnosis the way she does it was nothing like I have ever had before or since. She was absolutely highly involved in time spent with me, with labs onsite and equipment to sometimes get results while I was there. Her recommendations that follow are also pretty different, including dietary recommendations, vitamins, supplements, exercises, the whole thing, on top of any prescribed treatments. And once you are diagnosed, you are done. She is on to other people needing help and you are back to your main care physician with huge folder of test results & documented conclusions.

I tried looking a little online to see if I could find some terminology for you that might assist locating a physician like this, but I am not sure that is the right way. I suggested you asking around as I am not sure I would have ever found her any other way. I will say too that if you suffer, do not give up. There is always a chance they will find an answer and finding your relief is worth that fight.

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The problem you are running into is that medicine is a science, but doctors are practitioners. Doctors are not scientists. If your problem does not fit easily into one of their categories, it will be difficult to determine what it is.

Also, remember that doctors spend very little time on any individual patient. You get a 15-minute appointment and some tests, that's it. Not enough time to do serious investigations. If a bio-medical researcher spent every day working, the whole day, working on your case, they could probably figure it out.

The way to solve this problem is to collect as much data as you can. This will make it much easier for a doctor to figure out what might be wrong. The data you should collect is the following:

  • what you eat
  • when the discomfort occurs
  • exactly where it occurs each time
  • under what circumstances did it occur (sitting, lying down, walking, after eating, 1 hours after eating, during eating, etc)

Basically, you want to create a detailed log of your problem. This data is the starting point for getting a deeper understanding of your problem.

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    Doctors ARE actually scientists, with additional training as clinicians. At least in most countries. In the US, most have science degrees prior to med school, and even most of them have a publication or five. But science in 15 minutes is, accurately, limited in how deep it is POSSIBLE to investigate. The rest of your answer is solid. For problems that don't have a clear answer but are distressing to you, a longitudinal relationship with a primary care doctor (or specialist if needed) is a good idea to work together until there's (1) an answer or (2) symptoms are adequately controlled.
    – DoctorWhom
    Aug 16, 2017 at 16:22
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    I'll upvote if you adjust that first sentence. Unless you explain your reasoning, like if you're a physician or a doctorate level scientist with knowledge of the training involved? Maybe you mean career research scientists? Research is mandatory in training... Also doctors are more than algorithm crunchers - "easily fit" is not accurate and almost sarcastic. It IS true that if something doesn't fit a clinical picture clearly, it is very difficult to define. But there is much that hasn't been researched adequately yet, and a lag from research to publication (true in all sciences)
    – DoctorWhom
    Aug 16, 2017 at 16:44
  • You're right to a degree that if you had a researcher on your case alone, some things could be eventually figured out. But many will not. My mother has 2 conditions that no physician has ever been able to identify. I used to not be able to understand why not. Now I realize that there isn't enough known yet to be able to identify the phys/pathophys underlying a lot of symptoms and syndromes.
    – DoctorWhom
    Aug 16, 2017 at 16:51

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