How to find other help when doctors can't help
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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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 00 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.
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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