It could be useful? Or? NOT…

May 23, 2011 at 7:58 pm

Useful in that some doctors might be able to read about people who have this condition.
Not so good might be that YOUR doc mite see a reference of him/her-self that might not be too complimentary in respect to diagnosis. Conversely? Should a doc get a glowing ‘review’ by one of us? It could be that complacency could set in.
Therefore none of my docs ever get my e-mail address! Or, know my name here or other places.
So much of our getting diagnosed depends on your doctors’ experiences in encountering and/or diagnosing CIDP. Really the statistics are against us here, especially given the dozens of other related neuologic issues that overlap with our medical problems.
From all I’ve read tho, I know of only ONE physician who contacted a board about a patient who had had problems w/diagnosis w/in that practice. And that one patient now has a very solid relationship with the physician in terms of treatments.
Boards could be useful for interns and residents in sensitising them to the patients pains, fears and frustrations. However if they specialize elsewhere? Their radar might not be so sensitive to our overall problems.
As for the not so good docs? Should you apply for disability after reporting here or elsewhere? They could blast you out of the water w/all sorts of reasons which many of us have encountered and will encounter.
Jim? I truly like that you had the chance to talk to real docs as a real PERSON and that often helps make those key ‘connections’ we need to do in terms of ‘advocacy’ of the non-political type that reach out into those communities that need to be more alert.
Thank you for doing that!