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frightened.. *UPDATE*

Posted by on Dec. 14, 2009 at 1:57 PM
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i just joined...   i have three little boys (5 , 3 and 7mo). just this morning my dr called and told me my ana test was positive for lupus. i'm very overwhelmed and frightened. i have an mri tomorrow and meet with a rheumatologist on wednesday.  what i should ask? what are the treatments? what does a positive ana test mean? can i still nurse my baby? anything you guys can give me will be helpful. thanks.  

  ETA:  so i saw my rheumatologist  on wednesday and she doesn't think i have lupus. i have 2 of the required 4 symptoms to receive the diagnoses. however, she said i do have an autoimmune disorder (most likely a connective tissue autoimmune disorder) because my ana count was very high 1:70. my mri didn't reveal anything significant, but it confirmed i do not have cancer, so that's a relief.  she ordered several new tests and i'll find out those results dec 30th.

I've been reading alot about controlling (or minimizing) my autoimmune disorder symptoms through diet. have any of you altered your diet? did it help? tia.

 


     

by on Dec. 14, 2009 at 1:57 PM
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chickensmommy
by on Dec. 14, 2009 at 2:52 PM

a positive ana alone does not mean you have lupus...and yes, i breastfed my daughter throughout the dx. process.  all an ana means is that there is some autoimmune activity going on, but it is not specific for lupus.

rfurlongg
by on Dec. 14, 2009 at 4:41 PM


Quoting chickensmommy:

a positive ana alone does not mean you have lupus...and yes, i breastfed my daughter throughout the dx. process.  all an ana means is that there is some autoimmune activity going on, but it is not specific for lupus.

thnx for the response.

so does a positive ana indicate an autoimmune disorder, thought not necessarily lupus, or just autoimmune activity going on? i'm guessing my rheumatologist will request more tests?


     

momof3inCT
by Member on Dec. 15, 2009 at 11:11 AM

Ok try not to panic I went thru the SAME EXACT thing...........I had some liver levels OFF so to say when I found out I was preg with my 3rd so I had to wait to pursue tests etc....but after my MRI never showed anything but ANA came backpositive too and they told me........it means you have some type of auto immune disease which one we dont know b/c there is no EXACT test but there are certain blood markers for lupus so they ran those I WAS NEGATIVE but the drs said all my symptoms were pointing to lupus or sjorgens and he truely felt I had lupus.........since many of the treatments are the same he began me on meds and i improved a lot. and 3 months ago my ANA was even boardline the drs were shocked so it is possible to have those levels fluctuate too...........HOWEVER I have had a bad month so Im sure my levels are back up ... just par for the course I suppose.

MY ADVICE..............go to the dr and take it from there one STEP at a time! GOOD LUCK this week!

chickensmommy
by on Dec. 15, 2009 at 4:43 PM

just keep following up with your dr and keep a list of any new symptoms that pop up!

chickensmommy
by on Dec. 15, 2009 at 4:44 PM

and yeah..my rhumey is a friggin vampire with all the blood tests!!!

sarasotasandi
by Member on Dec. 16, 2009 at 8:16 AM

Deep breath - first, a positive ANA test is only one indicator of lupus.  The ANA is actually pretty non-specific and can be positive for many different types of auto-immune conditions.  You will need to talk to your rheumatologist about further testing, then put together all your information with your symptoms and medical history.  If you have been nursing your baby for the past 7 months,  I don't see any reason to quit now.  If you do have lupus, you can't give it to your child.  Later on, depending on meds you might take, you may need to reconsider.  The primary treatment for lupus has been and continues to be managing the body's inflammatory response, usually with steroids.  Other drugs, methotrexate, imuran, plaquenil and NSAIDs are also commonly used.  For mild cases, many people are placed on plaquenil and NSAIDs, others need high dose steroids to get things under control, and later you would be weaned off the steroids and given one of the other drugs.  The goal is to keep the immune system quiet and reduce inflammation, which reduces damage to the organ (s) primarily being attacked. 

The most important thing you can do is develop a good relationship with your rheumatologist.  Make a list of questions, keep a notebook and jot down new thoughts, concerns and questions so you have them ready when you visit.  Don't let yourself be intimidated into not asking questions - that is not the doctor's goal, but often in their busy practices, they gloss over things.  They rely on you, the patient, to tell them when you need more information or explanations. 

Keep coming back and let us know how you are doing.

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