Someone in our local support group sent me this article recently. We’ve had quite a few individuals with neurological conditions or family members discover the diagnosis themselves rather than receiving a diagnosis from a physician. In this article, “People with rare or baffling conditions offer tips on how to do your own research and work with doctors to find answers.”
I think tips and resources suggested by this article are great advice, even after you have a diagnosis you can believe in.
The general research resources suggested include:
* PubMed, pubmed.gov
* CiteFactor, citefactor.org
* Wikipedia, wikipedia.org. Especially for footnotes.
The research resources specific to rare diseases (defined as fewer than 200,000 Americans affected) include:
* Undiagnosed Diseases Network, bit.ly/UDNInfo
* Online Mendelian Inheritance in Man, omim.org
* National Organization for Rare Disorders, rarediseases.org
* Genetic and Rare Diseases Information Center, bit.ly/NIH-GARD
The tips on finding answers include:
* trust what you see
* follow your instincts
* make connections
* dig into the research
* separate good research from bad
* find a community
* work with your doctor
* don’t give up
Here’s a link to the article:
Self-Diagnose Successfully: Patients sometimes understand their baffling conditions better than their physicians. Learn how to build a convincing case and work with your doctor to find answers.
by Richard Laliberte
Volume 12 – Issue 5 – p 16–20