4 ms·

I feel some people are focusing on the wrong thing, most likely because of my poor presentation. I'll try to answer your question, but I also want to elaborate

by Shooter 17y ago

I feel some people are focusing on the wrong thing, most likely because of my poor presentation. I'll try to answer your question, but I also want to elaborate a bit: In relaying my story, I kind of 'cast' the diagnosing physician(1) as the hero, in part because it was such a relief to me for someone to finally listen and think logically, because it was relief to me to finally have an answer...and also because I was trying to shorten the post. But remember, by the time I saw this doctor, I had my condition narrowed down to a couple things already, and one of my guesses was correct. A search engine could have had equal billing, diagnostically. This guy didn't have a halo on his head when I found him or a neon sign saying he was "The One." He was not the first person I was told was an amazing diagnostician or "like House." He was just one in a long line of doctors, albeit one of a small number that was compassionate, open-minded and listened. I never brought up my ideas about what I had until I gave the doctors a chance to give me their ideas, because I didn't want to bias them. This doctor was just the first one that hit on the actual problem, and was willing to order confirmatory testing. It was largely odds. If you see enough doctors, it will probably happen eventually...a million typing monkeys and all that. The real heroes are the doctors who will actually treat you once your diagnosed, even at great risk to their livelihood. The real heroes are the ones that will fight the insurance companies and help you while you're going through treatment. The final diagnosis wasn't really magical, or the act of an amazingly brilliant doctor. Yes, having the diagnosis was a psychological relief, but the most important could be this: the big, insurmountable problem for most people will not be getting a diagnosis but finding - and paying for - a treatment. There is basically a witch hunt in this country for doctors that diagnose and treat complex diseases. Complex means expensive, and insurance companies don't like that. Getting a proper diagnosis can be an enormous problem, but it is often just the start of the journey. (1) Um, I'm getting tons of emails asking for my specific diagnosing doctor's name - which I simply can't give out. If you have any of these particular diseases, he will not treat you anyway. Remember, he turned me away. He would not even start a battle with the insurance companies. If you have something unusual or that is complex or that is outside of the insurance company parameters, he would send you elsewhere for treatment anyway.

Shooter 17y ago
That all said, here is how I found "the doctor": 1. I was persistent. I saw lots of doctors. The 22 number I mention in my post is mostly just the specialists I saw - not even all the general practitioners I visited. 2. If I were to rank the doctors I saw, the better ones were either members of IFM (functional medicine), they were DOs (shady origins, but a more holistic viewpoint), and/or they were internal med doctors. Rheumatologists only seem capable of seeing certain things. Neurologists only seem to see certain things. In general, specialists were unable to see or care beyond their specialty. Which, I guess, is somewhat understandable. [The specialists did find clues, however, like the lesions and the hormone issues that eventually helped me find the underlying cause.] 3. I asked around for someone who had a good reputation as a diagnostician. I asked doctors, business leaders, and hospital administrators. Unfortunately, many doctors seem to pride themselves on their amazing diagnostics skills, whether they actually possess them or not. So, I also asked for "open-minded" and "compassionate." Compassion implies a good listener, which is probably the most important thing because you can't find a pattern if you didn't hear about it. Some of the worst doctors I visited were the famous ones. They were too busy to listen. IIRC, I think the final diagnosing doctor had been trained at a podunk med school in Cuba or something. 4. I was an informed patient. I used to work in the medical field (piss-collector, clinical drone, researcher, and software developer.) I researched extensively on my own. (This can backfire for some people, because they develop cyber-hyperchondria.) In any case, I knew - or learned enough - to get a lay of the medical landscape and I used that to my advantage. 5. I kept a 'journal' that listed what symptoms I had on what day, etc. - it helped me find patterns. Some organisms have a specific lifecycle, so that helped me in my own search. Sometimes the only pattern was that there was no pattern, but the journal exercise was still very helpful. Just be careful about looking like a nutjob if you carry a handwritten book of your woes into a doctor's office. 6. I was an inpatient patient. I know doctors are just average schmucks like the rest of us and they make mistakes, because I've worked with them. So, if a doctor didn't listen or was a jerk, I never went back. Some people think doctors are holy or something, and they continue going to visit a jackass in the hopes that something will change. That can kill you. That tendency is especially prevalent in older people. 7. I acted professionally when dealing with doctors. Enough of them thought that I was nuts that I didn't need to confirm their suspicions by acting too emotional or unreasonable. Even though I was often emotional, I kept it under wraps. 8. I tried to find doctors that kept up on the latest research, or that at least seemed to care about new research and treatments. To be honest, I knew more about the most current medical studies than any doctor I visited, including the final diagnosing physician. I was more motivated and I had more time on my hands. But I used my knowledge to separate out the doctors who read the bare minimum for their CEs from the ones that were genuinely interested in their field and read broadly for their own benefit. 9. To restate an above point: I never brought up my ideas about what I had until I gave the doctors a chance to give me their ideas, because I didn't want to bias them. I had to remain open-minded too. You may not like the answer you get, but if there is compelling proof about it you have to accept it. 10. Read and know your insurance policy if you're in the US, and fight for your rights.

by Shooter 17y ago

Shooter 17y ago

That all said, here is how I found "the doctor": 1. I was persistent. I saw lots of doctors. The 22 number I mention in my post is mostly just the specialists I saw - not even all the general practitioners I visited. 2. If I were to rank the doctors I saw, the better ones were either members of IFM (functional medicine), they were DOs (shady origins, but a more holistic viewpoint), and/or they were internal med doctors. Rheumatologists only seem capable of seeing certain things. Neurologists only seem to see certain things. In general, specialists were unable to see or care beyond their specialty. Which, I guess, is somewhat understandable. [The specialists did find clues, however, like the lesions and the hormone issues that eventually helped me find the underlying cause.] 3. I asked around for someone who had a good reputation as a diagnostician. I asked doctors, business leaders, and hospital administrators. Unfortunately, many doctors seem to pride themselves on their amazing diagnostics skills, whether they actually possess them or not. So, I also asked for "open-minded" and "compassionate." Compassion implies a good listener, which is probably the most important thing because you can't find a pattern if you didn't hear about it. Some of the worst doctors I visited were the famous ones. They were too busy to listen. IIRC, I think the final diagnosing doctor had been trained at a podunk med school in Cuba or something. 4. I was an informed patient. I used to work in the medical field (piss-collector, clinical drone, researcher, and software developer.) I researched extensively on my own. (This can backfire for some people, because they develop cyber-hyperchondria.) In any case, I knew - or learned enough - to get a lay of the medical landscape and I used that to my advantage. 5. I kept a 'journal' that listed what symptoms I had on what day, etc. - it helped me find patterns. Some organisms have a specific lifecycle, so that helped me in my own search. Sometimes the only pattern was that there was no pattern, but the journal exercise was still very helpful. Just be careful about looking like a nutjob if you carry a handwritten book of your woes into a doctor's office. 6. I was an inpatient patient. I know doctors are just average schmucks like the rest of us and they make mistakes, because I've worked with them. So, if a doctor didn't listen or was a jerk, I never went back. Some people think doctors are holy or something, and they continue going to visit a jackass in the hopes that something will change. That can kill you. That tendency is especially prevalent in older people. 7. I acted professionally when dealing with doctors. Enough of them thought that I was nuts that I didn't need to confirm their suspicions by acting too emotional or unreasonable. Even though I was often emotional, I kept it under wraps. 8. I tried to find doctors that kept up on the latest research, or that at least seemed to care about new research and treatments. To be honest, I knew more about the most current medical studies than any doctor I visited, including the final diagnosing physician. I was more motivated and I had more time on my hands. But I used my knowledge to separate out the doctors who read the bare minimum for their CEs from the ones that were genuinely interested in their field and read broadly for their own benefit. 9. To restate an above point: I never brought up my ideas about what I had until I gave the doctors a chance to give me their ideas, because I didn't want to bias them. I had to remain open-minded too. You may not like the answer you get, but if there is compelling proof about it you have to accept it. 10. Read and know your insurance policy if you're in the US, and fight for your rights.