I make sure that I give my health care providers my own detailed, typed notes (2-3 pages the first time, less for updates) of my medical history (not much of interest before IBS), the circumstances of onset, every single possibly related symptom, every treatment I've tried and what happened or didn't happen (including the self help stuff, since in my case, conventional medicine wasn't much help at all). I even write a section summarizing the various resources I've used to educate myself on IBS, the major people in the IBS community with whom I've made contact, the IBS studies I've volunteered for and mostly been rejected from and my advocacy and awareness efforts, sometimes copies of relevant articles from IFFGD/UNC etc, so at the very least, it's clear to them that I'm not ignorant on the subject. I don't know how much of it they read, if anything, but they do put it in my file, and if it's in the file, it's in the medical record for what it's worth, and it's not just the provider's own brief notes that leave out 90% of the information. I hope that will follow me wherever I need it to.
This information above needs an amendment - at least. I know the original poster meant well, however, my experience is very different. I have given many written journals, notes, records, photos, discs of info, and other types of proof to my medical doctors over the years - since 2004 at least. All the while, I thought they were being permanently saved in my file. These were given to both specialists and GP's. Each said, to my face looking me in the eye, that they'd keep it in my files. Now, all these years later, when I received copies of all of my medical records I find that not one single piece of information that I gave them was put into my file.
And trust me, I requested copies of EVERYTHING in my files - from a to z. They just don't keep what is given to them. They only include copies of data they collect or create themselves in their labs and offices. So while the poster meant well - you need to check and double check this method on your own, with your own doctor. Give them something, and then request your records and see if it is in there. In my case, it simply was a waste of my time. In fact, I even offered to give former x-ray results to my rheumatologist, x-rays from a hospital with final findings from the radiologist - and while my rheumy felt the data was significant to my health, he explained to me the records themselves wouldn't be of much use to them in my files (as in it won't end up in my new records with their facility) - but he was glad to KNOW I had this identified condition!
HOWEVER, on a brighter note - the original poster need not be as worried that IBS isn't on the fast track list of illnesses that get awarded SSDI most quickly. This site explains a bit more about
"How To Get SSDI Approved"www.ssdrc.com/blog/2008/10/how-to-get-ssdi-approved.html
I am currently waiting for the decision on my first attempt for SSDI. If that fails, I'll hire an attorney to do the appeal. Fingers crossed. I did print out a year's worth of my own medical journal, a booklet of my medical highlights over my lifetime which led me to becoming disabled and unable to work, and a list of all my illnesses (came to be 17 conditions) - and sent all of that along with my application to the SS office. Oh - and I collected all my medical records myself - and sent them to the SS office. First, you need to know what your doctor's are writing - and second you need to make sure the files really do get to the SS office and get there in a timely manner. Many a case is lost because records don't show up in time, or don't support the applicant's claims.
Post Edited (TheChickenPrincess) : 5/10/2011 11:16:19 PM (GMT-6)