Anyone diagnosed with lupus have negative ANA but positive rheumatoid factor?
2
yes - 28.6%
3
no - 42.9%
2
positive ANA only - 28.6%
0
other - 0.0%

 
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frustrated
New Member


Date Joined Jan 2008
Total Posts : 2
   Posted 1/29/2008 10:13 AM (GMT -7)   
Hi all,
 
I have recently returned to my doctor and asked him to please test me for lupus and rheumatoid arthritis.  Everything started about 5 years ago with pain in my neck.  Mri of my neck revealed a buldging disk and blood work showed an abnormal esr.  This problem has been ongoing for the last 5 years with lots of trips to the family doc, bloodwork, xrays, bone scans you name it i've  had it.  All tests always came back negative.  The latest bloodwork shows a rheumatoid factor of 80 and an elevated bilirubin.  I am sore all over and have a consistant headache all day everyday and am awaiting an appt. to see the rheumatologist and was just wondering if it sounds like something I should pursue?, or should I just leave it at RA?  I am only 29 with a 5 month old and 9 year old and I am really beginning to feel guilty about all of the things that I cannot do with my children because I am so sore and really need to get a definitive diagnosis.  Any ideas of what questions/tests to request from the rheumatologist?  Thanks for any info.

Post Edited (frustrated) : 1/29/2008 10:20:44 AM (GMT-7)


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 1/29/2008 3:37 PM (GMT -7)   
Hi Frustrated,
 
Welcome to the forum.  I'm sorry you are dealing with so much discomfort and pain.  I, very recently also had the joy of figuring out if I had RA. I was diagnosed with arthritis in my neck, back in October.  The pain also radiated into my shoulders.  So I ran the possibility past my rheumy.  She's awesome.  She said, no. I don't have RA because RA only attacks the joints in the body that has synovial fluid in them.  The vertibrae in the neck that would be affected by RA are C1, C2.  That's it.  My arthritis is in C3, 4, 6, 7.  Those vertibrae have discs, no synovial fluid.  I learned something very valuable!
 
Do you know which vertibrae are affected in your neck?  You can have a positive RA factor, but not have RA.  All the triggers have to be perfect to develope RA.  Which other joints are hurting you?
 
I would pursue the lupus testing.  Get a lupus blood panel done.  See what else is going on.  How high is your ESR?  It's a test that isn't always one that tells the truth.  You can have a normal ESR and feel like crap.  Then you can have an elevated ESR and feel just fine.  It's not the best indicator of what is going on, unless the number is crazy high....
 
Best thing to do is keep a daily diary of EVERY symptom you have.  How much sleep you need, any triggers that you know of that make you feel worse.  Also, if you have any rashes, take pictures of them.  The more info you can have written down, the better.
 
Is your appointment with the rheumy soon?
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


frustrated
New Member


Date Joined Jan 2008
Total Posts : 2
   Posted 1/29/2008 5:59 PM (GMT -7)   
Hey,
 
Thanks for your reply.  I also have the neck pain radiating into my shoulders, but especially in my right shoulder blade which I assume is from my neck?  The mri of my neck showed buldging disk in c5 and c6.  Other joints affected include, elbows, wrists, knees, and ankles.  I also have pain everywhere!  Every muscle in my body feels tight, stiff and sore, I also have a lot of pain in my liver and have been told on numerous occasions that my liver feels inflamed but the ultruasounds always came back good.  As far as the esr is concerned I know that right now it is normal but there were a few times in past years that it was around 19?  does that sound right?  but now it is normal.  When I questioned my doctor about lupus he said he didn't think it was that because the ana came back negative to which I replied, you can still have lupus with a negative ana can't you?  he said no.  I do however agree with him that it is more of a soft/connective tissue problem and he did diagnose me 3 years ago with fibromyalgia but my gut tells me it's something else.  Does that make sense?  Anyways now I feel like I am rambling.  I am awaiting the appt. for the rheumatologist probably 6-8 weeks.  Thanks again
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 1/29/2008 8:27 PM (GMT -7)   
Hi Frustrated,
 
Well, what I'm about to tell you might frustrate you even more....
 
That ESR of 19 is still considered normal.  Normal is anywhere between 0-20.  If it's getting into the 40's, 50's, etc, then the doctor takes more notice of it.
 
If it's RA, and you've been feeling the symptoms of joint pain for about 5 years now, you'd be seeing quite a bit of deformation in your hands, knees, etc.  The crippling process happens relatively quickly from what I have learned.  Lupus itself will cause joint pain, so will Fibromyalgia, which you have been diagnosed with.  You mentioned you have pain everywhere.  That is pretty classic fibromyalgia.  I have it too.
 
The inflammed liver could be a fatty liver.  That is common as well.  If your liver enzymes are tested and they come back elevated, your doctor might look at that first, depending on which test is high.
 
Certainly there is something going on if you're feeling all this pain.  I wouldn't rule out the fibro yet though.  YOu might want to check in with the ladies in the fibro forum, see what they think.
 
Blessings,
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


gtmriviera
Regular Member


Date Joined May 2007
Total Posts : 338
   Posted 1/30/2008 8:49 PM (GMT -7)   
Mention was made of synovial fluid, something extremely important to the body and a frequent source of trouble, but most people have never heard of it.  I won't try to explain it here, but I suggest you look it up. 
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