(((((( Domanique )))))))
It IS really hard to deal with chronic illness when you don't know what you are dealing with. Its hard after dx too. . . . but at least you have a name for it and, hopefully, a game plan by then.
Your documentation is REALLY important. The docs get SO many clues from your symptom list. There is a post in "Lupus Resources" on making notes for the doctor visits . . . . but, initially, you need a really complete, chronological list starting with your earliest symptoms. You can create this list while you are on the computer. Reading posts here will trigger your memory every time you see someone mention a symptom. Before I found this website, I didn't even count a lot of my symptoms because I thought it was all just normal stuff . . . YIKES I thought most of my junk was really normal. We just learn to live with SO much.
I have a hard time in the doc's office too. That's why I always bring my typed notes. I have one for me and one for the doc. It has my current symptoms, rx meds, otc meds, questions and a statement about
what I want the doc to accomplish on that visit. It really does help with most doctors. A couple docs just took it and put it in their file. But on the following visit, I realized from their comments that they both had read the sheet I had prepared for the previous visit.
Are you seeing a rheumatologist??? That's when I started making some progress with dx and treatment. The rheumy is the one who can put all the clues together. It really is a difficult process for a doctor because these autoimmune diseases mimic each other and so many other conditions.
I hope you make some headway with dx soon.
In His Grip
AlwaysRosie "We can't control the waves, but we can learn how to surf!!"
Co-Moderator - Lupus Forum
UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)
Clickable Links: Lupus Resources Lupous.Org Lupus Criteria (4 of 11) Lupus Chapter Locator