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PLEASE ADVISE-ANA Levels/symptoms

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Posted 5/2/2012 5:48 PM (GMT 0)
Hello All,

For sixth months I have been having problems with my joints. It started with a crunching noise every time I turned my neck..then slowly moved to every other joint in my body...horrible cracking/snapping noises when i move my shoulders, wrists, hips, knees, ankles, even toes now. I'm now also feeling weak and shakey, with twitching, but I don't know if that's nerves... i have horrible right knee pain, and for four days have had a dull headache at the bottom of my skull on the side where my neck cracks the most. I'm also feeling odd muscles movements, like things are popping out of place where they shouldn't be, and it feels like they're straining all the time... Now I'm not so sure if it's my joints or muscles...

I have had two ANA level tests done. One in march came back positive, 1:320, speckled...and one in april came back positive, 1:160, speckled. My GP never told me I tested positive in march, she just referred me to a rheumatologist, and said talk to them about my symptoms, possibly arthritis. I'm only 23 though, not sure if I should mention that.

When I saw the rheumatologist, she said she wasn't sure, could be hypermobility syndrome (which i am convinced that's not the case) but to come back in 3 monhths?!?!...in the meantime she ran some blood tests (those are the ones in april) she said it could have been a false positive because I tested negative for lupus. She never saw my first round of tests, and I just found out about them today.

My question is...I know I'm on the lower end of positive, and the one in april came back lower than the one in march...but, is it really probable that two different labs came back with false positives? especially with all the symptoms I'm having? and has anyone experienced similar symptoms?

Any advice would be appreciated...I'am at a loss.
Posted 5/2/2012 6:01 PM (GMT 0)
Both numbers you received are positive ANA's. However, that doesn't mean you have Lupus, there is no single definitive test. For Lupus, rheumotologists usually use the "4 of 11" measure you can find by following the "Diagnosing Lupus" link in my signature.

"A titer above 1:80 is usually considered positive. The pattern of the ANA test can sometimes be helpful in determining which autoimmune disease is present and which treatment program is appropriate. The speckled pattern is found in SLE and other connective tissue diseases. Because the ANA is positive in so many conditions, the results of the ANA test have to be interpreted in light of the person's medical history, as well as clinical symptoms. Thus, a positive ANA alone is never enough to diagnose lupus. On the other hand, a negative ANA argues against lupus but does not rule out the disease completely."

However, often diagnosis is not nearly as important as treatment. Did the Dr prescribe anything to relieve your symptoms?
Posted 5/2/2012 6:06 PM (GMT 0)
Sorry, i don't know much about all this yet...to be clear, you do think my ANA levels are indicative of something autoimmune related going on? The only thing they have prescribed so far (because the pain has really only started within the last two weeks) are a muscle relaxer to relieve the twitching, and .5mg of lexapro to take as needed (because I've been a nervous wreck since they can't figure out what's going on...i fear MS/ALS, but now that I've received the ANA bloodwork, I'm thinking maybe it's more autoimmune related). Neither have given much relief though.

Post Edited (adamico88) : 5/2/2012 12:09:19 PM (GMT-6)

Posted 5/2/2012 6:30 PM (GMT 0)
I also have a speckled pattern pretty consistently - sometimes two patterns are reported - usually the other is nucleolar.  Occasionally homogenous.  I started out at 1:160 about 3 years ago.  Lots of symptoms.  When it reached 1:1280 I was started on Plaquenil - but still only have a dx of UCTD (undifferentiated connective tissue disease).  Other blood markers for Lupus remain negative, with a mildly positive rheum. factor. 

Since then, the ANA has been all over the place - down to 1:80, and even once I think it was negative.  I saw a dermatologist a couple weeks ago.  She suspected Sjogren's so did labs.  The ANA came back at 1:320.  One week later I had an appt. w/ my rheumy.  I showed him the results (neg. for Sjogren's).  He decided to run his own labs, since I was due for some others.  He reminded me that the ANA was not an indicator for disease activity, but was just a marker.  He ran another ANA anyway, however, and the result was 1:160.  One week later.  Different lab.

I have also heard that once a positive ANA has been established - the test doesn't really need to be repeated.  But the other markers for Lupus, RA, MCTD etc. should be repeated from time to time as they can change.  Rheumatologists seem to have individual ideas about this.  At any rate, your symptoms are what's most important and need to be addressed.   www.lupus.org  is a good place to start for information.

In the meantime - keep track of your symptoms.  It may take awhile to get to a diagnosis.  Don't be afraid to return to your GP or rheumy if your symptoms increase.  They should be sharing information.

Posted 5/3/2012 1:06 AM (GMT 0)
Thank you so much for the advice, I'm definitely going to keep track of my symptoms, since they seem to be getting worse/changing daily. The waiting process is so very frustrating...but my levels are significant, correct? I know i've read how the scale works, but for some reason it's still confusing to me...especially since my doctors failed to even go over them with me. I'm mad they keep brushing it off....I'm seeing a neuro tomorrow though, just to get his opinion, make sure it's nothing neurological going on with my muscles. Maybe he'll be able to clarify some of the bloodwork.
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