Should I keep pursuing for a diagnosis?

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New Member

Date Joined Aug 2012
Total Posts : 1
   Posted 8/23/2012 11:02 PM (GMT -6)   
I just turned eighteen. I've had Raynaud's for a long time, I remember the symptoms early elementary school. I only got a diagnosis this year, I had never heard of it, I just thought I had poor circulation. The doctor who tested me mentioned that it's sometimes secondary to lupus. I had blood work, my results came back with an abnormally high amount of some sort of antibody, I didn't quite catch it, cardio lipid I think. I looked up lupus and I have quite a few of the symptoms that I never really paid attention too, I've always had odd collections of symptoms, it's a joke in my family that I'm just a weird one. I have Raynaud's, random fevers (not very frequently, but), photosensitivity, fatigue, rashes on my hands and jaw, the glands in my neck are hard and painful sometimes. I do have depression, could be unrelated though.
I had a second round of blood work done as a follow up, but I came back normal. Apparently I tested abnormal, but they re-tried it and it came up fine. Beyond that, my white blood cells were a bit low, same with a few types of platelets. I believe my clotting time for the "russel viper venom time test" was a bit slow. Anyway, I got a call from the secretary, you're normal, thumbs up. I've kind of been shut out, I'm not high priority anymore. I can't get through to him and my family doctor is away.
Do I already have my answer? I hear Lupus is very difficult to diagnose. I just don't feel like this is resolved.

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 8/23/2012 11:48 PM (GMT -6)   
I'd see a different Rheumy. As soon as you can see your primary tell him to send you to a different one.

ANA can change. This is why it's hard to diagnose.
When life throws you lemons....
Pick them up and throw them right back at them! :))

Regular Member

Date Joined Feb 2011
Total Posts : 399
   Posted 8/24/2012 9:28 PM (GMT -6)   
Hi Veridan,

I totally agree with Joy. I would definitely get a second opinion. This is your health and body you are talking about. It took years for me to be diagnosed. When it finally did happen, I was upset, but also relieved. Hang in there!!


New Member

Date Joined Nov 2011
Total Posts : 3
   Posted 8/27/2012 6:26 PM (GMT -6)   
First of all Im so sorry that you have to deal with any of this much more so at your age. Were you on any steroids before getting the second round of testing done? If so that can also change the results. I don't know if you do or don't have Lupus, but one thing for sure is you are you're best advocate. You know something is wrong, keep pursuing until you find answers. I wish you the best hun.
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