list for doctor

Hi All!

I have been putting off going back to a (any) doctor but finally made an appointment w a new Rheumy. I have heard she is very good. After accidental exposure to sunlight through car window - I have been feeling really bad on top of rashes on that side of my face.

Im worried I will leave with no treatment again. I wanted to post this list I created for her and get your two cents on what I should expect.

Thanks so much in advance! I'm so reluctant to get no where again!

extreme rashes from sun - malar rash - lacey rash throughout body, mouth ulcers often, disk shaped non scaring rashes, difficulty breathing, fatigue, joint pain - knees, feet (difficulty walking up/down stairs), costochondritis (most of the time), extreme allergies to food and medications, and chemicals (chlorine), extreme dizziness, feet turn purple

very sick after sun exposure and florescent lights - intense rashes

positive subacute lupus rash biopsy
positive lupus band test on wrist (non exposed, no rash site)

negative ANA and other lupus related test (I think)

Gilly

Hi, no the joint pain is generally just when I am not feeling well. Very stiff, hard to get up and down stairs, my small joints in hands and feet as well. Yes, I have low grade fevers, and hair loss when I am sick.

As far as 4 out of 11 - I have malar rash (most consistent symptom), sun related rashes, mouth sores, joint pain without swelling, I had one unexplained episode of seizures when I was 29 which started all the health problems.

I have such a bad time with skin rashes, and the sun - besides positive biopsies, (the mt sinai doc on last one said it was a connective tissue disease based on IgG and IgM deposits and high mucin etc.).

There is something really terrible that goes on directly related to sun - and my face and vneck area are worst- my dermatologist keeps referring me to Rheumatologist but they want positive blood tests and Im stuck.

Could Lyme or Yeast cause all of this?

Is there another rheumy you can see?

Check with the local chapter of www.lupus.org to see which local Drs are on the advisory board -- these are the Drs interested in lupus. I say that because there are rheumies who aren't that informed about lupus and they are usually the ones who rely strictly on blood tests.

The national & international Lupus organizations, the rheumy society, and the CDC all say you can have 4 or more of the 11 symptoms (ie without a positive ANA blood test) and therefore be diagnosed with lupus. And there are also a lot of rheumies who believe that when a diagnosis is not clear cut that trying the lupus medications and seeing what happens is an aid to final diagnosis.

Hope you can find help soon,