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Lupus testing questions


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Old 03-22-2017, 09:27 PM   #1
Janehblack411
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Lupus testing questions

Hi there,
I have been sick for the past couple of weeks. I had pneumonia last month. I was having flu-like symptoms last week, so I got tested for mono through blood twice. The first time, it was a positive. The second time, it was a negative.
I've been to the ER twice in the past week because my feet are freezing cold and numb. Both of my arms down to my wrist are tingly and numb.
My neurologist said it was a sub-concious thing in her opinion based on stress.
I don't really think that, I'm not a very stressed person. But, she tested me for auto-immune diseased through blood testing anyways due to my request.
I guess I'm just confused as to if these symptoms could be lupus. From what I read online, my symptoms(extremely cold extremities, headaches, tingling and numbness, hair loss, extreme fatigue, loss of appetite, chest pain when breathing, false positive test for mono, low grade fever) sound like lupus. Opinions?
My last question would be if the ANA test came back negative. Even if it was negative, could it still be lupus? Is there any way that it still could be, or is it definitely ruled out. I read that lupus can be hard to diagnose.
Thank you the results should be coming back in a week.

 
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Old 03-29-2017, 05:07 AM   #2
VeeJ
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Re: Lupus testing questions

Hi, Janeh, and welcome. I'm sorry you're having issues. And yes, lupus can be very hard to dx because in it your immune system is "misfiring", on & off, thus trapping it can be a matter of timing, when you're seen by your doctors & when labs are run. Think of aiming at a moving target!

ANA. In systemic lupus (SLE), with modern tests, ANA is now positive almost always. One of my hardcovers lists exceptions: people (1) with antiphospholipid syndrome, (2) with biopsy-proven kidney lupus, (3) where strong meds have suppressed ANA, and (4) rare presentations, one being anti-Ro-positive and ANA-negative. So, while ANA-negative lupus is possible, it's really uncommon. Thus having a negative ANA is a clear indication that the causes OTHER THAN lupus must be seriously considered.

I'm just a patient, but here are some thoughts. First, I'd want to actually see my BASIC bloodwork. Look for abnormals, including vitamin deficiencies. Make sure certain optional tests, like Vit D, were included. (Examples: low Vit D can make one tired; low B-12 can make you feel tingly; etc.)

Also, make sure thyroid tests were run, because thyroid problems can cause symptoms overlapping an awful lot with those seen in lupus, e.g., hair loss, body pain, feeling hot/cold, etc.

Are you still having pain when you breathe? Was at least a chest X-ray done?

Do you have your results yet? Feel free to share, to see if anyone could pitch in more thoughts. Looking forward to hearing more, good luck, Vee

P.S. I was in category 4, positive for anti-Ro but negative for ANA, very rare, I was told. Biggest red flag that lupus was possible: years of photosensitive nonscarring skin lesions, finally proven by special skin tests to be a lupus rash. Low WBC's and elevated ESR on/off for years, frequent infections, also low B-12 & Vit D. Hair loss, pain, fatigue, migraine-like headaches, GI misery, weight loss. No major organ issues, meaning kidney, brain, heart, lung. My personal theory is, the milder you are, the harder the dx. And REALLY hard if you're some weird exception like I was, anti-Ro but negative ANA...

 
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