Here I Go

I still have a hard time believing that I'm starting a blog as a means to get a diagnosis. My clinic colleagues will be surprised by this approach. I have no idea what my patients will think. They've been so supportive of me during my medical leave and slow return to part-time practice that I doubt they'll have any objections. I would hope that this doesn't cause them to lose faith in our entire medical system because I'm definitely a piece of that system and generally proud of level of care we have in the US.
I've been ill since Nov. 2002. Before getting sick I worked full-time at my clinic and did lots of prenatal care and deliveries. My c-section rate was very low and I was proud of the care I offered to all of my patients. I tried to give people the type of care I would want for my family members, including my brothers who are uncomfortable when visiting doctors. I was respectful of their time, concerns and wishes while not compromising what I considered to be quality,evidence-based, medical care. I put a lot of effort into the patient-doctor relationship and felt rewarded when my patients greeted me out in our community. I was very physically active. I walked 2 miles daily, lifted weights on my home gym on even days of the month, water skied in the summer and cross country skied in the winter. I enjoyed biking. I was tough- I generally came from the "suck it up and go on" school of thought (I didn't ask this of my patients, however). Our kids were born when my husband and I were in medical school and residency and we were well beyond the stressful years when my problem started.
When I came down with this malady I expected the same type of care that I gladly gave my patients. My family doc has done her job but I've found many of the medical specialists to be lacking. Several have not been careful historians or thorough examiners. Few seem interested in digging into the unusual circumstances of my case. The neurologists, as a group, have been the most disappointing. This presents a major obstacle as the other specialists do see clinically identifiable problems which they believe are neurological in origin. Routine neuro tests, and there have been many of them, have been normal. To the neuros this seems to negate the exam findings. I believe it simply means that we are not using the right tests. Maybe there isn't a test for the problem but they should state that instead of implying that my observations/complaints aren't valid. They might try to write me off as "nuts" but that would imply a group psychosis as other MDs continue to document a decline in my status.
In primary care we frequently run into problems we can't solve and most of us can freely admit this to patients. Often we refer the patient on in the hopes that a specialist can see the pattern that we've missed. I don't wash my hands of the patient when I do that. I usually communicate with the specialist as to why I'm sending the patient and I read any info I receive back from the consulting physician. If I'm left out of the loop I frequently try to find out what happened to the patient. It seems that this tiered referral practice might place an unique burden on the specialists as the expectation is that they'll figure things out. Most of the time they do identify the problem and successfully treat the patient. When they can't do this patients can easily be lost to the system. I'm one of the lost and it has been a frustrating experience.
In upcoming segments I'll define the specifics of my case. I'll also offer examples of what can be done on a small scale to make major improvements in patient care.