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Frustrated and questions about auto immunity blood tests

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Posted 8/24/2011 1:40 PM (GMT 0)
My mom has lupus, fibro and RA. My sister has fibro. I have fibro.

I have seen a rheumatologist after labwork showed positive ANA (speckled) and positiive RF. Following that I had positive tests for p-ANA, auto dsDNA and once more positive ANA and RF. Further testing came up negative. So he diagnosed fibro, and sent me on my way. Symptoms increased and my torso rash got much worse, aching, etc so they retested. Now everything comes back negative. So I'm wondering - my primary care dr is sure there is an autoimmune disease that has not yet been diagnosed - do you just wait and see if things get worse? I have had joint swelling in 2 joints, positive dsDNA, positive ANA, mouth and nasal sores, rash (but not malar) - do your 4 out of 11 criteria have to occur simultaneously for a diagnosis?

Also have autoimmune thyroiditis, endometriosis, fibro, IBS, IBD, allergies, asthma and IC.
Posted 8/24/2011 5:12 PM (GMT 0)
Hi hun,


Sorry to hear you are going through this. I had the same thing happen to me! I became sick-joint issues, face rash ect ect and I had blood work done I tested pos for all kinds of autoimmune issues plus positive ana.Well I went back for blood test and tested pos for lyme and very low vitamin D (level 7). I then went back and have a neg ana, no lymes and a vit D of 19.

I just saw a new PC doc today and I am very satisfied with the outcome. At first I was nervous as I have so many issues and I thought maybe the would not understand. To my surprise they were very well versed on Lupus and other autoimmune issues. I told her all my symptoms and my issues with vit-D and she stated that I am far too young to be having these problems. I am 25, just out of curiosity how hold are you?

Also she told me blood work is NOT relible when it comes to autoimmune illnesses such as Lupus, she says it changes at a drop of a hat. She said that the symptoms it what matters because obviously it is not normal to be having such extreme health problems.

The PC also told me that I could be having such issues with Vit-D because my stomach is inflamed and I am not able to asord it like a normal person, she says this is common in people with Lupus. Even when I was on over 15,000 units a week it only went up to a 30 when I stopped the large amounts it went down, now I have to take 50,000 units per week. She also says that inflamation is the reason why my lymph nodes are always swolllen and is the reason for my heart and joint pains.

Dont give up! I was about to and did for awhile but what my PC said to me makes sense - there is no reason to be feeling so sick for so long, its def a chronic issue.

Post Edited (LAWCHICK) : 8/24/2011 11:32:07 AM (GMT-6)

Posted 8/24/2011 6:23 PM (GMT 0)
45, but have been dealing with these symptoms for many years. They came on slowly, at first were there off and on, now more constant. I am so frustrated. All drs just go by the labwork. The last one said my labwork could not be better, I'm cured! I wanted to scream.
Posted 8/24/2011 7:00 PM (GMT 0)
The 4 of 11 do not have to occur simultaneously. Some less-informed rheumotologists and other doctors not trained in detecting auto-immune diseases (these include GPs, PCP, and the like) try to stick with the lab tests, but with Lupus they ARE NOT the primary diagnosing criteria. In some areas, especially smaller towns, you may have to look very closely to find a rhuemy who can treat you. I suggest you keep getting second opinions until a rheumy takes you seriously and provides treatment. Lupus can be, and has been for many of us, diagnosed without labwork.

Check our Lupus Resources section and take note of all symptoms, dates, pictures, circumstances, etc while you are on this journey. These should be as valid to a competent dr as a lab test. Check out www.lupus.org for a local group in your area -- doctors associated with this group are more likely to use open-minded diagnosing techniques.

Hope you all feel better soon,
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