Hello Arturo & Everyone, after securing an immunologist at U. Of CO Hospital (thank you Arturo for suggesting I seek out a university hospital setting), my doctor was very cautious about putting the SCLS label on me even though I had been hospitalized in ICU 5 times in 18 months. I had been diagnosed with SCLS & was seeking IVIG treatments. This wonderful doctor ran many tests, conferred with Dr. Druey, whom he knew at NIH, & in the end it would seem that my hospitalizations were due to anaphylactic shock caused by a developed allergic reaction over a 20 year period of using psyllium husk fiber to regulate normalcy in my bowels. Of course I immediately discontinued the use of the fiber. It has been nearly 2 years since I have had such an episode. I wanted to say a BIG THANK YOU to You, Arturo, & to all those in this community who stuck with me & encouraged me along the way. I truly believe without the help of this community & Arturo, I would not have known where to go & would not have found the help I needed to solve the mystery. Just to think I might have been put on IVIG for the rest of my life based on the original diagnosis, when I did not have the actual disorder. So again, my gratitude is nearly inexpressible! Ann Fallentine

You are most welcome, Ann, and I wish you good health going forward. Those of us with rare or undiagnosed illnesses often must take charge of our medical management and seek the advice of top-flight doctors with professorial rank in major medical centers. Otherwise, we must insist that our existing doctors refer us to a major medical center and, in the case of the United States, to the National Institutes of Health, just outside Washington DC, where there are research programs available for patients without a diagnosis. In May 2008, the NIH launched the Undiagnosed Diseases Program, a clinical research program that aims to provide answers to patients with mysterious conditions that have long eluded diagnosis. This trans-NIH initiative focuses on the most puzzling medical cases referred to the NIH Clinical Center in Bethesda, Maryland, by physicians across the nation. Physicians and patients with additional questions may call 1-866-444-8806. _www.ClinicalTrials.gov_ is a database that provides current information on clinical research studies. One can search it for research studies looking at general categories of diseases (e.g., neurological or eye diseases) or specific symptoms. Some studies accept individuals without a diagnosis with the research goal of making a diagnosis. One study that is enrolling individuals who do not have a diagnosis is entitled "Studies of Children with Metabolic and Other Genetic Diseases." This study is evaluating individuals with known or suspected genetic diseases, including metabolic diseases. Despite the name, people of all ages may be eligible for this study. To find out more about clinical trials that take place at the NIH, one can call the NIH Clinical Center to talk to a specialist: Patient Recruitment and Public Liaison Office NIH Clinical Center National Institutes of Health Bethesda, Maryland 20892-2655 Toll-free: (800) 411-1222 Fax: (301) 480-9793 E-mail: _prpl@mail.cc.nih.gov_