Getting to a diagnosis is like a puzzle

[connie50]

It feels that way to me.

You get bits and pieces that make up the corners and frame work to let you know that you have something autoimmune going on.  As time pass and more tests are done you get another piece or two to fill in the body of the puzzle and hopefully, eventually you get enough pieces in the body to get a sense of what the picture is going to be like.

Every 6 months or so I add another piece to the puzzle.  No wonder it can take years to get a diagnosis. I wish I would have chosen a smaller puzzle or one of the kids puzzles with giant pieces. 

[P.Trish]

Connie,

You are so right!  Like most of us, I have been working on this puzzle for a long time - at least -  6 yrs for me: quite the challenging jigsaw version.

[quietdynamics]

Hello Connie,
Timely analogy.. I just used the puzzle a image the other day.

Problem is it is a puzzle whose picture I would never have chosen 
And the pieces are found on a medical scavenger hunt, as we travel from specialist to specialist, who segment/systemically compartmentalize  our symptoms and have no reason to connect-the-dots. 

How often have "we" heard from a Dr. after reporting a significant symptom "that is not my area, not related to SJS". Then referred to a specialist who is not familiar with SJS.and tests come back negative?..and add insult to injury later read that indeed current studies do show SJS patients with "the" symptom" (just probably your Dr. is not up on the current "events")

So we collect and carry our own files of tests results and take them to the various Drs...our collection of "puzzle pieces"  And then become emboldened and print out studies and give them out too. I highlight in yellow 

Maybe one day a National Database? An invasion of Privacy is a real concern. Cost is raised as an issue, however, duplicated testing would be decimated, errors in diagnosis due to lack of information would decrease, data for disease would be available and hopefully advances in treatments, best practices and cures, etc. And think of how this will help future generations. documented medical generational family histories..Wow. What a help for the probable and evolving diseases as yet unnamed.

"In the United States, a push for a national, unified health care system ... To support a system of this nature, a huge national database will have to be built. And everyone's medical records will have to be entered into a universal system that all doctors, hospitals and emergency personnel will have access to....... both the House and Senate agreed to allocate $3 billion toward "the utilization of an electronic health record (EHR) for each person in the United States by 2014,."

Here is the link to the Congressional Bill.. after you open it go up to the binocular (search) and click on them. type in  electronic health records   that will take you to the section and you can adjust the type so you can read it.  Hint: Drink copious amounts of coffee.
http://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=2&ved=0CD4QFjAB&url=http%3A%2F%2Ffrwebgate.access.gpo.gov%2Fcgi-bin%2Fgetdoc.cgi%3Fdbname%3D111_cong_bills%26docid%3Df%3Ah1enr.pdf&ei=i_-jUPC5LMiY0QHfq4HYBw&usg=AFQjCNEhbIIYMwc_oTGs3ovaJKmwKvhe5A&sig2=IKtZI-rRPWAeal1LA4JrNQ

Just thinking..

[connie50]

I may drive my doctor nuts but I have always asked a lot of questions, make suggestions and follow up researching on my own.  It's my body and I want to know to the best of my ability what's going on.
For me, knowledge and understanding the situation calms me.

I forgot to take my notes to the doctor the other day and he was asking for them.  He also made a suggestion on the course of medication he thought I should take or not take and wait for it......  asked me what I thought about his suggestion.  I was so surprised and almost speechless that he would include me in the decision making process.  That felt great !

It must say on my chart somewhere: Asks a lot of questions , takes notes, researches on line, needs to know whats going on, wants copies of everything , definitely not a " yes Doctor, whatever you say Doctor"

Quietdynamics- I can see your point about having a national database but my privacy is too important to me to go down that road.  I'll just have to make sure all my doctors are on the same page, yeah right !