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Agirlandhertort1 05-20-2012 08:19 PM

Quote:

Originally Posted by Idiopathic PN (Post 881318)
Dear Mrs.D,

I had 4 times tested for Rheumatoid Arthritis and ANA in the last 2 years due to my arthritis. All the tests were done before my neurological symptoms.

Is it possible that the result negative can become positive several years after?

Thank you.

I know you addressed this to Mrs. D, but I can tell you that my first (and only other) Rh test was negative. I might be able to find the link later, but it said that with autoimmune disorders, many times they will test negative until the disease progresses past a certain point. Also, many people only test during an active flare.

Of course, close to a quarter of all people with ra don't ever test positive. I know some doctors will treat the symptoms, and consider you as having it.

Idiopathic PN 05-20-2012 08:53 PM

Quote:

Originally Posted by Agirlandhertort1 (Post 881328)
I know you addressed this to Mrs. D, but I can tell you that my first (and only other) Rh test was negative. I might be able to find the link later, but it said that with autoimmune disorders, many times they will test negative until the disease progresses past a certain point. Also, many people only test during an active flare.

Of course, close to a quarter of all people with ra don't ever test positive. I know some doctors will treat the symptoms, and consider you as having it.

Thank you for your kind reply.

This is quite becoming more confusing to me! I do not understand why certain blood tests could result to negative and yet positive with the illness, example:

1) Sjorgren's Syndrome - some blood tests could be negative but confirmatory test is through lip biopsy
2) Gluten Intolerance/Celiac - some blood tests can be negative but confirmatory test is through biopsy

One fourth is a significant population with RA symptoms with no positive result. Is there no confirmatory test for this case just like the above cited example?

en bloc 05-20-2012 09:14 PM

Actually, up to 40% of Sjogren's patients are sero-negative...staggering numbers.

You will find many different opinions on positive labs (and when they occur) with autoimmune diseases. Bottom line is that autoimmune diseases are still very poorly understood. There are MANY out there who flare or are in active states of disease, yet still sero-negative. Sometimes (I have read) medicines or other conditions might be the reason labs are negative. I have always been negative for Sjogren's yet, my disease was confirmed by lip biopsy and is in advanced stages.

I'm happy for you that you'll get some answers now and that makes treatment SOOO much easier and more effective.

When is your appt with the rheumatologist? Please keep us posted on the incoming labs.

Agirlandhertort1 05-20-2012 10:40 PM

Quote:

Originally Posted by en bloc (Post 881347)
Actually, up to 40% of Sjogren's patients are sero-negative...staggering numbers.

You will find many different opinions on positive labs (and when they occur) with autoimmune diseases. Bottom line is that autoimmune diseases are still very poorly understood. There are MANY out there who flare or are in active states of disease, yet still sero-negative. Sometimes (I have read) medicines or other conditions might be the reason labs are negative. I have always been negative for Sjogren's yet, my disease was confirmed by lip biopsy and is in advanced stages.

I'm happy for you that you'll get some answers now and that makes treatment SOOO much easier and more effective.

When is your appt with the rheumatologist? Please keep us posted on the incoming labs.

I have an appointment with the GP on Tuesday, and she will be writing the referral then. Since it is a large clinic, I am sure I won't have to wait too long for the rheumatologist.

That is incredible about your Sjogren's! It further proves that the blood tests are very flawed. Is that disorder responsible for your PN? Is it something that you can be treated for? I am glad that you had a doctor willing to provide the biopsy, as I know how hard it is to get testing done.

I sincerely hope that everyone finds answers. Our stories are so similar, with unexplained pain/issues, and being put off by physicians when the tests come back "normal."

I do understand that these abnormal labs only start the conversation. I know I have a journey ahead for the right diagnosis, but I'm just thrilled that I have evidence that proves it's not psychological!

mrsD 05-21-2012 02:22 AM

I think that the tests we have now don't test all the potential antibodies out there. The MG forum also has several people with myasthenia gravis who are seronegative for that.

Tests cannot be developed when the offending antibody has not
been identified yet.

More on Rh factor testing:
http://arthritis.about.com/od/radiag...heumfactor.htm
This site claims that high blood fat content will yield a false positive.

en bloc 05-21-2012 06:21 AM

Quote:

Originally Posted by Agirlandhertort1 (Post 881379)
I have an appointment with the GP on Tuesday, and she will be writing the referral then. Since it is a large clinic, I am sure I won't have to wait too long for the rheumatologist.

That is incredible about your Sjogren's! It further proves that the blood tests are very flawed. Is that disorder responsible for your PN? Is it something that you can be treated for? I am glad that you had a doctor willing to provide the biopsy, as I know how hard it is to get testing done.

I sincerely hope that everyone finds answers. Our stories are so similar, with unexplained pain/issues, and being put off by physicians when the tests come back "normal."

I do understand that these abnormal labs only start the conversation. I know I have a journey ahead for the right diagnosis, but I'm just thrilled that I have evidence that proves it's not psychological!


Yes, the Sjogren's is the cause of my PN. In some cases there are treatments (IVIG for one) to help with PN from an autoimmune disease. However, they found my dorsal root ganglion is damaged (ganglioneuritis/ganglioneuropathy) from the Sjogren's, and there is no effective treatment for that, to date.


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