Quote: What are some other things that might go too often undetected in the current medical industry climate and cause similar kinds of problems?
Hmmmm...good question, Joe. Off the top of my head, it's hard to think of another disease where the same issue of dogmatic thinking leads to as much missed and under-treated disease.
I guess celiac disease would fit the bill. In medical school, we were taught that celiac disease was a rare disease, which always resulted in chronic diarrhea and weight loss. (It is due to an autoimmune reaction to gluten in wheat and other grains). More recent research, though, shows that at least 1 out of 200 samples of banked blood contain the antibodies specific to celiac disease - making it way more frequent than previously thought.
Still, in this country (US) you are unlikely to get tested for this unless you present with the "classic" symptoms of diarrhea and weight loss. There are probably untold numbers of people out there with milder chronic GI symptoms - probably a lot of people diagnosed with "irritable bowel" - who in reality have a mild form of celiac disease. And even though the incidence is higher in people who have thyroid disease or Type I diabetes, endocrinologists often don't think to look for it - because, after all, that's a disease treated by gastroenterologists!
This is one area where European medical practice is ahead of the US - there screening programs have even been put in place in some countries.
Of course, there are plenty of diseases that get missed, but that's often due less to the current industry climate and more to the inherent difficulties of those diagnoses. I think it is true, though, that people with hard-to-diagnose diseases often end up on the "specialist merry-go-round" - they see one specialist, who determines that the illness isn't due to anything in their field, so they go to another specialist, etc. etc. with no one looking at the big picture and putting all the peices together. Ideally that would be the job of the family physician or internist, but these days that primary care person is rushed and overworked, and may not have the kind of long-term relationship with the patient that facilitates diagnosis ("I KNOW there's something wrong with Joe, this is not like him"). Finding a good primary care physician and sticking with them is your best insurance.
Autoimmune diseases in particular can have a lot of vague symptoms and be difficult to diagnose if you're not thinking of them - lupus, for instance, is called the "great imitator" because the symptoms are so varied, and often are mistaken for other diseases. The AARDA, an advocacy group for autoimmune diseases, has called for the formation of integrated multispecialty clinics to treat autoimmune diseases, but that hasn't happened yet.
Information management in medicine is still somewhat archaic. One of the great advantages patients have nowadays is access to the internet. Although much of the information they may find there is wrong or even dangerous, if you know your way around you can often find out way more about your own health than you could in the old days. Searching PubMed, which searches medical articles and gives you the abstracts, is often a good place to look, although the medical and scientific jargon will be thick. Also guidelines published by the major medical societies, and patient advocacy groups for various illnesses. can be great sources of information.
I would say to patients out there: - trust your instincts. If you're not satisfied, push for answers. - do your own research - always follow up and get your results (actual numbers) when you have lab tests done.
