Narcolepsy Forum Posting

Posted by Linda on November 05, 1999 at 21:55:58:

In Reply to: why do people persist in giving medical advice? posted by steve on November 02, 1999 at 14:10:36:

While I agree that people shouldn't be "prescribing" without a medical license, I think perhaps you are oversimplifying the situation of trying to understand and manage a complex and relatively uncommon disorder like N or IH. It is NOT a simple matter of trusting and turning to an "expert"--this forum is full of unhelpful and even destructive experiences resulting from that approach alone. Had this forum been available to me when I first sought medical help, I likely would have had sufficient information and support to press on in the face of an ill-informed doc who failed to diagnose my IH, leaving me with another decade of struggling to stay awake and feeling like I should be able to somehow control it since he said I didn't have a sleep disorder! The reality is that the collective knowledge of those of us in this forum in regard to narcolepsy and IH, its symptoms and treatment options,is superior to that of many, if not most, general practitioners. Obviously, our knowledge is not superior to that of competent sleep specialists, but most of the truly good ones in that group will readily admit the necessity of "trial and error" adjusting of medication regimens for N and IH, and many of us have been supported by our docs in controlled experimentation with our own medication schedules and doses. Sharing the results of these experiences with one another does not constitute prescribing or diagnosing, but rather can serve as a source of new avenues to try, with our doctors' approval, and can also very importantly serve as an avenue of hope. Much of what has worked best for me in managing my IH has come from ideas I have presented to my sleep doc; though he is a highly competent sleep specialist at Duke University, he had never really used the stimulant which proved to work best for me, for example (Adderall), because it has been marketed primarily for ADHD, not for sleep disorders. Most of my professional life has been spent in medical settings, and I have developed a healthy cynicism toward the "MD as God" model of treating illness. I firmly believe that it has to be a partnership and that we are shortchanging ourselves if we don't adopt a very proactive stance toward our own health care.

Follow Ups:

• Re: why do people persist in giving medical advice? steve 11/08/99 (0)

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