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View Full Version : This may sound crazy, but..



tripLexie
01-31-2012, 09:05 AM
So I have an appointment with a new PCP in about 2 weeks. I've had so much trouble with my doctors so I want to ensure that I am as prepared as I can possibly be.

I seem to be going through a 'flare' right now (facial rash, extreme fatiuge, chest pains, joint pains.. etc., etc.). And I know this sounds CRAZY, but I want to make sure this stuff is still going on in two weeks to I can present my condition to it's best (or worst) ability. I have been talking pictures and keeping a journal in case I'm better in two weeks.. But I still feel like there's more I need to do.

What do y'all suggest as far as prep for a 1st time appt.? I know I want to request blood tests but do y'all reccomend anything specific? Anything else I could be doing to help my doctor, help me? I just don't want to walk out of yet another doctor's office feeling the same way I went in.. I want this process to start so I can begin addressing all the issues. HELP!

tripLexie
01-31-2012, 09:08 AM
And should I tell him I was diagnosed with juvenille rheumatoid arthritis about 10 years ago? (due to joint pain and a postive ANA)

I'm not sure if the diagnosis was wrong or not but 10 years later, I have no signs of damage to any of my joints. And I very rarely have swelling either, which leads me to believe this diagnosis may have been incorrect...

tgal
01-31-2012, 09:45 AM
This doesn't sound crazy and over the years this has come up several times. I am about to share a story although, health wise, I CAN NOT recommend that anyone do this to themselves. It can cause damage to your system and start, or worsen, a flare.

When having issues with my tests coming out in a way that my old doctor would accept in order to diagnose me (some of those tests STILL have never come out the way he would have expected) I was given a piece of advice on what to do before I had my appointment. I am very sensitive to the sun and UV rays. They mess with my entire system, not just my skin. The doctor already accepted and diagnosed me with discoid lupus but he wasn't willing to diagnose SLE even though I was now having seizures. I was very frustrated and someone told me the following:

" make your appointment in the afternoon and spend half an hour or so outside before you go in for your appointment since that should send your body into chaos".

It did although not all the tests came out the way he wanted them a few did. My body doesn't react in the classic way and it took a really wonderful doctor to figure out that just because test ABCis fine test XYZ isn't and it means the same thing. I do know others that have done this and it works about half the time. I really can't recommend it though because it could cause your symptoms to get worse.

Take pictures of everything and keep a journal of symptoms. That is more important than anything. It is very sad that we have to resort to thinking about things like this just to get a diagnosis

red246
01-31-2012, 11:18 AM
I agree w/Tgal about taking pictures. I get "splotchy skin", aka Livedo Reticulitis, really bad at times. Of course it is never acting up when I go to the doctor. She looked at me like "yeah, right" when I told her about it, so the next time it happened I took pictures. Best of luck w/your appt!

tripLexie
01-31-2012, 11:41 AM
Well crazy as it is, I thought of doing something similar. It seems as if the fluorescent lights in my office are enough to cause a malar looking rash on me.. And it seems as if this rash is continuing to progress. Obviously as a student I was consistently under these lights, but not until a month or so ago have they bothered me enough to create a rash (I've been working in the same office for a year now). I make sure and take pictures and have documented my symptoms.. I just hope I'm 'flaring' in 2 weeks so any tests come out the way they are supposed to.

When I was diagnosed with JRA, obviously the joint pain and pos ANA promted that diagnosis. But years after when other symptoms started to present, mildly, I was randomly tested during a check-up with another doctor and it came back negative. I've heard if your system isn't fighting like it would during a flare, those tests can produce negative results.

Hopefully I get some answers!

macell
02-02-2012, 10:34 AM
Keep a binder with all your lab results, xrays, doctor notes and such as well as journal and pictures. I found that handing a new doctor a binder with prior information from my doctors is helpful.