Posted by EREIAMJH on November 4, 2003, at 19:59:23
In reply to Wow, some of the things I read here scare me., posted by srd1074 on November 3, 2003, at 20:51:44
... if you had been a fly on the wall for the decades I've dealt with various medical professionals in the treatment of neurobio disorders.
I'm amazed by your statements that "people don't understand that NO-ONE knows their body better than they do" and "People should be actively involved with understanding their own bodies - it would help their doctors make a better diagnosis." The ugly truth is that most of us understand both of these points better than you can imagine, and the vast majority of the time this understanding and self-education is looked at with hostility and suspicion by medical professionals.
Read my thread below re: Paxil withdrawal woes for an illustration. After being shrugged off by my doc when reporting some alarming side effects, I looked them up on my own. When I reported my findings to the doctor, I was told, "Okay, you have to stop reading those things. They are what's causing your problems." Apparently they believe *reading* now can cause impairment of platelet aggregation due to platelet serotonin depletion, psychosomatically. Hmmm...
While I agree wholeheartedly that patients should work to educate themselves both on the disorders they or their family members have, and the medications they are taking or considering, I think that a fundamental change must be instilled in the attitudes of medical professionals to facilitate and welcome this.
Every time I speak to a doctor about neurobio disorders in which I am well versed, I feel the need to dumb down my verbage for fear I'll be accused of displaying Munchausen's or Munchausen's by Proxy. One neurologist nearly had a fit when I said I felt it was time to test me and my son for Antistreptolysin O and Antideoxyribonuclease B when we displayed negative strep cultures but severe increases in vocal tics following strep exposure. Guess what? After he grudgingly agreed (in his words, "just to humor you") our titers proved to have elevated levels. Yet I was still eyed with suspicion whenever I vocalized a concern or any apparent knowledge of the disorders or related research and treatment.
If you haven't read it already, I'd highly recommend reading an article from JAMA, January 17, 2001—Vol. 285, No. 3, titled Stigma, by Myrna M. Weissman, Ph.D. It not only details the shocking bias against neurobio and "behavioral" disorders and the families who deal with them, but also the prevalent attitude of medical professionals towards parents who are perceived as "overly focused" on their own children's medical conditions. If you are unable to access it, let me know and I'll locate a link to it. You should find it quite illuminating, and disturbing I should think, based on the feelings you seem to have IRT patient input and participation.
poster:EREIAMJH
thread:276285
URL: http://www.dr-bob.org/babble/20031030/msgs/276636.html