curious_guy (imported) wrote: Tue Jul 19, 2011 10:02 am Did you ever find one? If you did, how many physicians did you have to go to before you found one?

Yes, and I eventually found more than one. Not without much difficulty and family tragedy...

Alas, before I found more than one, my brother died from the sort of cancer I have been able, so far, to prevent.

Beginning in 1985, by which time my risk of genetically-driven cancer had become dreadfully clear to me, I set out to reduce my cancer risk. More than 25 years later, I apparently have not developed cancer, though I have had regular outpatient and inpatient surgeries (at major research university hospitals). The main genetic condition is familial adenomatous polyposis and the literature gives the average age of death, absent sufficiently effective surgeries, as 42 years. My dad and brother died from such cancer, I have the gene for it, but have managed to get adequate surgical interventions before cancer has developed. This is one of a number of rare genetic conditions for which cancer is usually terminal well before there are any symptoms.

That said, in 1985, I set out in search of physicians (gastroenterologists and urologists) who were willing and able to accept, and preferably understand, the bioengineering approach (Bayes-Theorem based biological pattern recognition using a form of tensor calculus -- yes, I do have bioengineering degrees) I was using. Most physicians I consulted summarily rejected my view, and I consulted a psychiatrist to make sure my being transgendered was not my main reason for seeking the orchiectomy, and kept returning to one urologist whom I had earlier seen for routine care. I bought an Elastrator and bands from the Sears Farm Catalog as a way of persuading physicians that I was serious; I did not use it on myself. After several visits to this urologist (now deceased), he finally pointed out that he had not been entering my orchiectomy concern in my chart and would not do so. He finally told me how to go about finding "a doctor in a third rate hospital" who might do an orchiectomy. It was not convenient for me to head off to Dr. Spector, though I knew of him from things I had found in the medical literature.

I figured a vasectomy clinic might be a decent approximation to a third rate hospital, took what the urologist had told me (he told me he would deny ever telling me what he had told me), and began calling vasectomy clinics and physicians who did vasectomies. As with the urologist, I finally found a vasectomy doctor who did not totally reject my concern, and persuaded him that I would do the surgery myself if no physician would do it. The vasectomy doctor agreed on the condition that he would keep no record of the procedure, it would be for cash, and I agreed to never identify him. I do not have an exact count, but my recollection is having talked with more than 40 physicians before I found a way to get a safe orchiectomy. The dad of the doctor who did the surgery had died at least partly in consequence of prostate cancer.

When I got the orchiectomy, in the early summer of 1986, my brother already had terminal cancer, which was identified within two weeks after my orchiectomy. About two months after the orchiectomy, I got the colectomy with ileo-rectal anastomosis and, some four years later, had major surgery for a duodenal polyp that was heading toward becoming cancerous. My concern for cancer risk was validated, terribly validated by my brother's cancer death and subsequent surgeries at university hospitals and even, along the way, the Mayo Clinic in Rochester.

Following the colectomy in the summer of 1986, I developed what was deemed a morphine-induced psychosis, which led to about as wild a ride as I can imagine possible through the medical establishment. I had about two months between the orchiectomy and the colectomy, enough time for me to know that the orchiectomy was not what "messed me up." When, in 1990, I had the duodenal major surgery, general anesthesia and morphine had about the same effect as in 1986, only it took me about three days of inpatient psychiatric care to figure out what had happened, not three or more years. Learning can sometimes happen.

Having studied relevant aspects of biology beyond what many physicians would ever dream of doing, it is my sense that I really rattled quite a few of the physicians I consulted. When I found one who did not almost instantly reject what I was saying, I pursued talking as far as it would go, finally getting a safe orchiectomy in a safe setting, and had no complications of consequence.

The colectomy two months later and my reaction to general anesthesia and morphine, in both 1986 and 1990 finally made clear to the psychiatrist I was seeing in 1990 and for a couple years thereafter that my seeking the orchiectomy was because of a genuine risk of cancer and death from cancer. When I finished seeing that psychiatrist, his parting comment to me was, as I remember it, "You are as mentally healthy as anyone I have ever known or heard of."

However, in the fall of 1986 as I could not, of my own effort, overcome the "morphine-induced psychosis," I sought psychiatric care, only to find that I was misunderstood terribly. I informed my psychiatrist at that time that I was autistic and that something had happened to me during childhood which was so painful that I could neither remember nor forget it, so devastating that I had developed multiple personalities to survive it. In that hospital, at that time, the belief in vogue was that multiple personalities were the result of faulty psychotherapy methods and were not the result of real-life shattering trauma(s). Furthermore, I did not meet their expectations of an autistic person, and they deemed my notions of cancer risk of shattering trauma, of being transgendered, and of being autistic as an elaborate form of schizophrenia. But they were wrong in so believing.

When I was first psychiatrically hospitalized because of the "morphine-induced psychosis," I was gravely concerned that I might name the urologist or vasectomy doctor, in spite of having promised not to name them. When my telling my psychiatrist about being autistic, transgendered, and multiple fell flat, I resorted to the story I used with to persuade the vasectomy doctor, which was that, absent suitable care, I would do the surgery myself, so that I would effectively be taking "full responsibility" for the orchiectomy and would block people from asking me who did the orchiectomy. This, more than anything else, hurt me deeply inside, being autistic as I am, I deplore dishonesty and deception. What I did, in engineering terms, was to figure out how people seemed to be misunderstanding me and making up "inverse functions" of the most important to me misunderstandings so that what concerned me the most got across reasonably well. Though the inverse function stories worked to get me proper psychiatric care, the agony of deceptions (inverse functions, that is) within the stories were a major aspect of the distress for which I needed psychiatric care. For me, that was a vicious cycle, the likes of which I would hope hardly anyone ever experiences.

The total number of physicians so far surely is well over 200. I do not have an exact count. Perhaps a couple of them understood my circumstances reasonably well, perhaps a dozen were willing to go along with my understanding without much arguing with me.

One psychiatrist, back in 1987, remarked one day that I was as good at diagnosis as he was, only I used "a different system." To which I said, "The difference is, my system works." What was the difference? He was using conventional "differential diagnosis"; I was using, and continue to use what I tend to name, "integral diagnosis."

To me, biological diversity is entirely normal, the whole realm of it. If there is a person twenty standard deviations from some norm, that person is as normal as those who are within one standard deviation of the norm.

janekane (imported) wrote: Tue Jul 19, 2011 8:14 am Rare conditions are difficult for physicians to diagnose because the conditions are rare.

How common do conditions have to be before most physicians should be able to make a correct diagnosis?

How many conditions are common enough for most physicians to make a correct diagnosis?

Is there a list of the conditions that are common enough for most physicians to make a correct diagnosis?

janekane (imported) wrote: Tue Jul 19, 2011 8:14 am Rare conditions are difficult for physicians to diagnose because the conditions are rare.

It is not just rare conditions that physicians often fail to diagnose.

I watch the TV program Mystery Diagnosis. In one episode a woman was very ill for 30 years. She had to go to 70 physicians before she got a correct diagnosis. She had an unusually severe case of endometriosis. I think they said on the show that endometriosis was the most common illness in women. (They might have said that it was one of the most common illnesses.)

My late aunt once told me that one of her tenants had to take their daughter to a dozen different physicians before her diabetes was correctly diagnosed.

The first time I took my very obese mother who was almost always cold to he physician, I had to ask the physician FOUR times before the physician would order a TSH test. The physician assured us that the result would be normal. My mother's TSH was 12.58. At that time, normal TSH was thought to be between 0.5 and 5.5. In 2002, the Society of Endocrinologists changed normal to between 0.3 and 3.3. If I had not asked FOUR times for the TSH test, my mother probably never would had been diagnosed.