Quote:
Originally Posted by glenntaj
--that annoy the living c%$p out of me. (And the dead c%$p, too.)
It is true that the work-up for neuropathy isn't standardized--UNLESS one is at a specialty center. At places like Washington University St. Louis, Jacksonville Shands, Cornell Weill, Jack Miller in Chicago, University of California San Francisco, Massachusetts General, and Johns Hopkins, the protocols are very similar, with variations made depending on symptom location and presentation. But all use a close analogue of the Latov/Quest serological protocol:
The fact that neuropathy causes are so varied and often hard to diagnose--at least a quarter of cases, even with these tests, remain stubbornly "idiopathic"--makes me think that a little more continuing education is in order.
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I went to one of the above named universities during the first year of my condition. At that time my entire body was still somewhat affected and I was 100% bed-bound. After spending 1 1/2 hours with a student doctor, the Neurologist that I was told I was going to be seeing came in, spent 5 minutes with me and told me to "get elbow pads, there was nothing I can do for you". I came away from there beyond low. Luckily we had double-booked two different university appointments and two months later went to the neurologist that I am now seeing. He diagnosed me in 5 minutes and said he did his training at that other university and that they were "a bunch of pompous a55h0$75". It was very validating. He stated that they only like to work with cookie-cutter cases. Mine obviously was not and they had to make me the problem, not make it something they couldn't handle. UGHH right!?
01-27-2012, 11:27 AM
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