Medical Mystery

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Irised
New Member


Date Joined Jan 2015
Total Posts : 2
   Posted 1/9/2015 7:22 PM (GMT -6)   
Hi all.

I am 18 years old, female, and was just diagnosed with Raynaud's Syndrome a few days ago (though I've had it for years). My rheumatologist put in for more bloodwork to test for lupus (anti-dna, and complement levels, and a CBC). I had a positive ANA test back in July that prompted my pediatrician to refer me to a specialist.

My symptoms were joint pain, Raynaud's, mouth sores (8 canker sores last year including one on my tongue), and chest pain with deep breathing. I do not have the malar rash and while I am fatigued, it's not super severe. The mouth sores and chest pain I've had since I was little, but they are increasing in frequency and severity. The joint pain is mostly in my fingers and knees, usually on one side or the other but never at the same time.

But, I just got my results back, and haven't heard from my doctor yet, but they're all normal. All within the CBC are within the normal range. My C3 was an 83 and my C4 was a 21. My dsdna said "<1:10" and "not applicable"--not sure what this means, as it had no reference range for me.

So...what does this mean? If my lab is normal, then why do I have these symptoms? I'm not making it up. I feel like that's what he'll try to say. He brushed off my chest pain when it didn't hurt too much when he was putting pressure on where the pain usually is, not x-rays or CT scans.

Is it possible to still have lupus with perfectly normal lab work?
If not...what do I have?

Edit: Forgot to add. RE: mouth sores: I have already tested negative for Celiac disease, and just tested negative for herpes simplex virus. I know these sores can be caused by stress, but 8 a year? I'm not that stressed.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 1/9/2015 7:30 PM (GMT -6)   
You can have lupus with normal bloodwork.
There is a list which rheumys are required to go by to diagnose lupus. You need to meet at least 4 out of the 11 indicators. Positive blood work is one of the 11 indicators. Some rheumys will not follow the list or insist on the bloodwork being one of the 4.
Try a different rheumy for a second opinion.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 1/10/2015 1:44 AM (GMT -6)   
Hi there, sorry that you're dealing with so much and having to cope with the symptoms of lupus. Like Joy said yo can have lupus w/o positive blood work. The lupus foundation notes that it's only about 5% of lupus patients that are negative in their labs. I'd say if you're feeling that badly I'd go for a second opinion and see what that Rheumy has to say.

Many people have positive ANA's and DO NOT have lupus. There are many reasons your Ana can be high. A simple cold can cause that. My daughter who is almost 22 has had a positive ANA since she was 7 years old at 1:640. She often gets rashes and joint pain. Plus her fatigue can be very bad at times. She is a Senior in college and works as an RA and another job on campus plus carries 17 to 18 credit hours a semester, I worry constantly that she's got lupus and it's not showing up and that they should be treating her now.

She's been seen how many times I can't say anymore. They all ay no AI disease of any kind right now. So, we watch and wait to see if she gets any more symptoms or what. My suggestion to you is, IF, you don't go for a second opinion, keep track of how your feeling. Take photos of any rashes and note how you feel on those days.

I hope that you do not have an AI disease and that you start to feel better really soon. Take care and let us know how you're doing.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

Irised
New Member


Date Joined Jan 2015
Total Posts : 2
   Posted 1/14/2015 3:14 PM (GMT -6)   
Thank you for your responses. I heard back from my rheumatologist today and he said that since my labs were perfect he is not going to diagnose me. He wants to put me on a blood pressure pill to treat my Raynaud's disease but I haven't filled the prescription because the Raynaud's isn't really what bothers me, what does is the pain in my joints. For that he said to just take ibuprofen. I guess I'll never know the cause of my symptoms.

I would see another except that my insurance has limited me to a choice of 3 and the other 2 were not good options.

I guess if my symptoms worsen I can press him to examine me again.

Thank you very much for your insight.
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