Posted by HFHSD.M.-DM on January 27, 1998 at 09:54:52:

In Reply to: seeking information to evaluate posted by James M. on January 23, 1998 at 23:40:47:

My brother (51/M/Caucasion) has been suffering for many months with a variety of increasingly debilitating pains and disfunctions, including severe head and neckaches, stomach and intestinal cramps, prostate pain, numbness in his extremeities, weight loss, exhaustion, and others. A variety of conventional medical diagnoses and treatments (antibiotics for any prostate infection; dietary changes for malabsorption; negative cat scans of various organs...) have not pinpointed a cause or relieved his symptoms, and he appears to me to be getting increasingly desparate. He has researched what appears to me to be an "alternative" medical diagnosis for a so-called "Wilson's Syndrome," and he is using a couple of different methods to find medical people who will support him in pursuing a treatment that involves some kind of thyroid treatment. I have searched the internet on Wilson's Syndrome and found no information that I would consider "conventional" medical information on this syndrome. Instead there is an interlaced group of medical providers and patients who seem convinced this diagnosis, and the associated treatment, have technical merit and success stories to back them up. There are a couple of internet sites that warn of quackery and risks associated with the treatment. In total, it is little to go from a "scientific" viewpoint. I have also searched MedLine, to no avail.

I am concerned about my brother making thoughtful medical choices, but it is also hard for me to put myself in his shoes, having not suffered his symptoms. It seems at least one thing I could do would be to help him get some information on this syndrome that is objective and potentially medically credible. Are you aware of any such information, or pathways that might lead me to such information?

I have provided the URL's for four related sites I found through a search on Wilson's Syndrome through Infoseek. They represent both a "pro" and "con" point of view; none is what I would consider objective in tone.

http://www.geocities.com/HotSprings/4613/wilsons.htm

http://e-pages.com/wellness/wellness_con/win.html

http://www.quackwatch.com/01QuackeryRelatedTopics/fad.html

http://www.mall-net.com/cathcart/wilsons.html

Thank you for this service, and for your attention to this request.

Dear James M:

I would like to able to help you but I am afraid there is a small misunderstanding. I suspect you were directed to the Gastroenterology and Liver Disease Forum because of confusion between “Wilson’s Disease” and “Wilson’s Syndrome”. Wilson’s disease is a very distinct entity involving the neurologic system and liver as a result of a disorder of copper metabolism. Wilson’s Syndrome appears to be a disorder of the thyroid and questions concerning it would probably best be answered by an Endocrinologist. If you feel I can be of additional help, feel free to post a second letter.

This response is being provided for general informational purposes only and should not be considered medical advice or consultation. Always check with your personal physician when you have a question pertaining to your health.

I hope this information is helpful to you.

Keyword: Wilson's syndrome

HFHSM.D.-DM