[MelodyL]

Hi

I was just reviewing Alan's blood tests. (many of them).

He always tested POSITIVE.

For YEARS.

I remember asking various doctors about this and they all said "we tested him for Lupus, he doesn't have Lupus, it's a false negative. Alan is 64 years old.

So last week he got a blood test result report again and I was on the phone with his doctor and I said 'What is this positive ANA thing?" and he said 'That's a false positive, we have tested him for Lupus (and he has been tested for Lyme (I remember they gave him every test in the book years ago) and he came back (as the same but they don't know why).

I just read this on the internet when I googled ANA positive I got this:

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A positive ANA test result may suggest an autoimmune disease, but further specific testing is required to assist in making a final diagnosis. ANA test results can be positive in people without any known autoimmune disease. While this is not common, the frequency of a false positive ANA result increases as people get older.

Also, ANA may become positive before signs and symptoms of an autoimmune disease develop, so it may take time to tell the meaning of a positive ANA in a person who does not have symptoms. Most positive ANA results don't have significance, so physicians should reassure their patients but should also still be vigilant for development of signs and symptoms that might suggest an autoimmune disease.

About 95% of those with SLE have a positive ANA test result. If someone also has symptoms of SLE, such as arthritis, a rash, and autoimmune thrombocytopenia, then she probably has SLE. In cases such as these, a positive ANA result can be useful to support SLE diagnosis. Two subset tests for specific types of autoantibodies, such as anti-dsDNA and anti-SM, may be ordered (often as an ENA panel) to help confirm that the condition is SLE.

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So do I need to ask his doctor to run more tests (I mean, we don't know what he has right?)

Are there other tests (because this is now 2011 and they have BETTER screening tests right??)

Appreciate any info.

Thanks much

Melody
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[glenntaj]

We DO know that Alan has at least one autoimmune condition--though, admittedly, psoriasis is not particularly associated with positive ANA titers--still, while there can be ANA "false positives", it is worth checking out some of the more specific tests to see what kind of ANA is showing up (speckled, bouble-banded, etc.) as these have greater/lesser associations with various types of autoimmune disorders.

Take a look at:

http://en.wikipedia.org/wiki/Anti-nuclear_antibody

http://www.rheumatology.org/practice...itions/ana.asp

[MelodyL]

Originally Posted by glenntaj

We DO know that Alan has at least one autoimmune condition--though, admittedly, psoriasis is not particularly associated with positive ANA titers--still, while there can be ANA "false positives", it is worth checking out some of the more specific tests to see what kind of ANA is showing up (speckled, bouble-banded, etc.) as these have greater/lesser associations with various types of autoimmune disorders.

Take a look at:

http://en.wikipedia.org/wiki/Anti-nuclear_antibody

http://www.rheumatology.org/practice...itions/ana.asp

Glen:

Just asked Alan "Didn't you go to a rheumatologist some years ago?"

Alan said "Yeah, and he ran blood blood work, and nothing showed up"

Now how can a person have autoimmune issues (and all his doctors ran autoimmune blood work including his neuro), and NOTHING EVER SHOWED UP.

I guess we shall never know.

I should have remembered that Alan had all that blood work done.

He had EXTENSIVE blood work done when he had the reaction to taking Celebrex. I remember the doctor from Hematology coming in and saying "We have two labs that do blood work, we have the labs that we send blood out to, and we have MY lab upstairs in hematology and I sent his blood to MY lab. I just want to make sure we are not missing anything."

Everything came back as NOTHING.

We need a Dr. House.

Thanks very much Glen. Hope to see you at the meeting.

By the way, did your wife make any cakes? lol

Melody

[en bloc]

Melody,

I have seen some of your posts and videos from PN meetings, but don't know much about Alan's diagnosis or symptoms. But I can say that Lupus is certainly not the only autoimmune disease associated with a positive ANA. So a work up beyond lupus should be done. As Glenn says, more detailed info about the results of his test...as in how high the level was and what pattern (speckled, double banded, etc) would be helpful.

Are there specific symptoms he has that you have no explanation for that you think might be autoimmune?

Of course, PN is associated with some autoimmune conditions. Do you have a diagnosis for his PN? Or is it idiopathic?

It is definitely possible to be sero-negative (no positive blood work) with an autoimmune disease. Blood tests for AI disease are more for 'markers' of the disease, not ones showing an active disease process. Actually, almost 40% of Sjogren's patients are sero-negative. I am one and was diagnosed by salivary gland biopsy. Sometimes blood markers turn positive years after diagnosis, sometime they don't.

That said, anytime a positive ANA appears, ALL autoimmune conditions should be explored, if the patient is experiencing any unexplained symptoms.

It's best to know 'what' tests were run and the results. Extensive to one doctor may not be extensive to another.

[MelodyL]

Originally Posted by en bloc

Melody,

I have seen some of your posts and videos from PN meetings, but don't know much about Alan's diagnosis or symptoms. But I can say that Lupus is certainly not the only autoimmune disease associated with a positive ANA. So a work up beyond lupus should be done. As Glenn says, more detailed info about the results of his test...as in how high the level was and what pattern (speckled, double banded, etc) would be helpful.

Are there specific symptoms he has that you have no explanation for that you think might be autoimmune?

Of course, PN is associated with some autoimmune conditions. Do you have a diagnosis for his PN? Or is it idiopathic?

It is definitely possible to be sero-negative (no positive blood work) with an autoimmune disease. Blood tests for AI disease are more for 'markers' of the disease, not ones showing an active disease process. Actually, almost 40% of Sjogren's patients are sero-negative. I am one and was diagnosed by salivary gland biopsy. Sometimes blood markers turn positive years after diagnosis, sometime they don't.

That said, anytime a positive ANA appears, ALL autoimmune conditions should be explored, if the patient is experiencing any unexplained symptoms.

It's best to know 'what' tests were run and the results. Extensive to one doctor may not be extensive to another.

HI. Alan has idiopathic PN. No other symtoms. He's been tested for everything under the sun. He does have psoriasis.

Very frustrating.

Thanks much

Melody

[en bloc]

If there is no other symptoms/problems, I wouldn't worry about the ANA. Should that change, then he should consider another work up.

[MelodyL]

Originally Posted by en bloc

If there is no other symptoms/problems, I wouldn't worry about the ANA. Should that change, then he should consider another work up.

How can it change? It's always positive. Do you mean, if it ever goes from positive to negative??

Thanks,
Melody

[en bloc]

I meant if he starts to have unexplained symptoms (a change from no other symptoms now)...then have another work up.

[MelodyL]

Originally Posted by en bloc

I meant if he starts to have unexplained symptoms (a change from no other symptoms now)...then have another work up.

Ah, I get you now. My husband is essentially a couch potato who gets NO exercise whatsoever. Can't walk to much because of a recurring foot ulcer. I try to encourage him to do fun stuff (to get his mind off of his neuropathy). But if anything changes, we'll be sure to tell our Dr. Fred.

And last night I challenged him to make his own ice cream in the Vitamix. This is a man who NEVER goes in the kitchen. Will not learn to cook, well, forget it.

I put my foot down and got it all on tape. He was a very good sport.

This has essentially nothing to do with neuropathy but I'm sharing this to encourage all of those who have neuropathy, that they can find ways to laugh once in a while.

Enjoy

http://www.youtube.com/watch?v=fU7bsL1heG4

Melody

[mrsD]

Mel, if you search ANA, you'll find medical sites that explain the ANA does go up and return to normal... it does change even in people with autoimmune disease.

If Alan has normal kidneys, no butterfly rash on the face, no arthritis, no dry eye or dry mouth, no thyroid disease, or progressing PN up the legs and into the arms, etc, then I guess the doctor will not attend to the result.
The ANA also may not be that high, either.