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Old 02-14-2009, 09:27 AM   #1
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Ana patterns

Do MD's know what the patterns mean or do just rheumy's?

For example: For 10 years, my patterns were always homogenous and speckled, together. Now all of a sudden, it's just nucleolar, by itself. So would an MD know what that meant or would just the rhuemy know?

 
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Old 02-14-2009, 02:28 PM   #2
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Re: Ana patterns

Well, MD's have a general knowledge of what ANA is will vary. Usually the people who would know are those trained in internal medicine, which includes rheumatologists. ANA is a grab bag of all sorts of different antibodies which can be directed at intracellular structures. Almost all people with lupus have ANA positivity, but after that, depending on their clinical manifestations, they may have differing anti-nuclear antibodies. Some people have anti-DNA, some anti-SSA (Ro), anti-SSB (La), anti-histone etc. etc. The commonality among these antibodies is that they are directed at things which are usually in the nucleus.

 
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Old 02-14-2009, 02:34 PM   #3
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Re: Ana patterns

I just didn't know if MD's know what the patterns mean--like nucleolar or homogenous. I didn't mean the ANA itself. I had asked my MD who is my CFS specialist if he knew for 10 years the pattern was homogenous and speckled and then why all of a sudden it changes to just nucleolar. I asked him if that was pointing towards my disease.

But he said he was sorry, that he didn't know.

So I'm guessing that MD's really don't know what patterns point to?

 
Old 02-14-2009, 03:43 PM   #4
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Re: Ana patterns

Well yeah, most MD's who aren't trained in internal medicine, don't know what the patterns mean.

The thing is, the pattern of the ANA staining can make a difference clinically as it suggests different types of anti-nuclear antigens present. ANA is like a big umbrella term that includes a lot of subsets of different anti-nuclear antibodies. Does that kinda make sense? I know it's confusing.

Do you understand the relation between ANA and other Extractable nuclear antibodies?

Last edited by harka; 02-14-2009 at 03:47 PM.

 
Old 02-14-2009, 03:50 PM   #5
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Re: Ana patterns

I don't know what extractable nuclear antibodies.

 
Old 02-15-2009, 08:44 AM   #6
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Re: Ana patterns

Extractable nuclear antibodies (ENA) are subsets of ANA. ANA is not specific, that is, if you have a particular ANA pattern it does not mean you can be diagnosed with a particular disease. The ENA are more specific.

You should have been tested for the ENA subsets that are most likely to be found given your ANA pattern. This detailed testing is normally done by the rheumatologist. S/he will take your symptoms into account as well when ordering these tests.

Keep in mind: your general practitioner doesn't see as many patients with ANAs as your rheumatologist does. That's why you would want to deal with a specialist.

Last edited by moderator2; 02-15-2009 at 07:39 PM. Reason: posted disallowed website(s)

 
Old 02-16-2009, 07:25 AM   #7
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Re: Ana patterns

Postie, Have you looked in your library for lupus hardcovers? Dr. Daniel Wallace lists in his book 16+ autoantibodies & antibodies seen in lupus.
He makes it clear that ANA is only a "threshhold test". In & of itself, it says very little EXCEPT that more specific tests & thorough clinical evaluation are indicated.

Examples of more specific blood tests for LUPUS include anti-ds-DNA, anti-Sm, anti-Ro, anti-La, antihistone, anti-RNP, antiphospholipid, antiribosomal P, antierythrocyte, ANCA, antilymphocyte, antiplatelet, antineuronal, rheumatoid factor, & various immune complexes. However, lupus is NOT dx'ed solely by bloodwork, not by a long shot. See the "sticky post" at the top of the thread list for the diagnostic criteria.

YOU SHOULD ASK if your doctor has run more specific tests, for lupus & for the OTHER conditions in which positive ANA is seen (Sjogren's, RA, polymyositis, scleroderma, Hashimoto's, Addison's, etc.---there are quite a few!) IF NOT, you should ask WHY NOT. You wouldn't want to think that your doctor only watched your ANA PATTERN for ten years!

Another thing to marvel at: doctors vary HUGELY in their knowledge. And many are incapable of changing course: they make up their minds, and that's it. I doctored in the suburbs, 25 miles from a huge metro area: many GP's, dermatologists, urologists, gastroenterologists, OB/GYN's, etc. My final GP believed I had a form of lupus, but the local specialists to whom he referred me disagreed. In disgust, I took myself to the "big city". To my horror, the rheumie & dermatopathologist took one look & basically said they only lacked confirmation. I had a "variant" that the big-city doctors recognized PDQ; but the suburban idjuts (excl. GP) wouldn't have recognized it had it BIT them.

I'm not saying you DO have something other than Chronic Fatigue (I'm just a dumb patient)---just that if you've not felt improvement in 10 years of "pain management", then you owe it to yourself to have everything double-checked, starting ASAP. Best wishes, Vee

 
Old 02-16-2009, 12:40 PM   #8
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Re: Ana patterns

To be fair to "small city doctors", lupus is a difficult diagnosis to make because it is based on clinical criteria rather than a simple pathognomonic symptom or sign. If you are coughing up green phlegm, have a fever and a new infiltrate on the chest x-ray, well, it's easy to diagnose pneumonia, but lupus is far different.

There are 11 criteria from the American Rheumatology Association which are:

1. Neurological symptoms (psychosis, seizures, strokes)
2. MSK Symptoms (symmetric polyarthritis, enthesitis)
3. Hematologic (leukopenia, thrombocytopenia, anemia)
4. Serositis (pleuritis, peritonitis)
5. Discoid rash
6. Nasal/oral ulcers
7. Malar rash (sparing the nasolabial folds)
8. Positive ANA (in 98-99% of pts with SLE...VERY sensitive test)
9. Other positive immune criteria (false positive VDRL, APLA, Anti-Smith etc. etc.)
10. Photosensitivity
11. Glomerulonephritis (6 types)

You need any four of those above to make a diagnosis of lupus. Almost all patients with lupus have positive ANA, and the small percentage who have negative ANA still have SOME subset of an antinuclear antibody which is positive on specific testing. So the first thing you can see is that two people with lupus can have a COMPLETELY different presentation. One person may have a picture which is dominated by arthritis and kidney problems, whereas another person has predominantly skin manifestations. In truth, lupus is probably many different conditions which are being described under one large umbrella.

VeeJ makes a very good point that the knowledge of what I just gave you above varies significantly from doctor to doctor. Some have trouble calling someone's diagnosis Lupus unless all criteria are met. Well, that's not necessarily good practice either. If a young Chinese woman presents with arthritis, a malar rash, positive ANA and pulmonary hemorrhage...well, technically only 3 criteria have been met, but she almost undoubtedly has lupus. (I said Chinese because it is well recognized that young Chinese women seem to have a higher incidence of lupus than the non-Chinese population of the same age and sex).

The other thing that a lot of lupus patients (and doctors!) get hung up on (no offense to ANYONE here!) is the antibody testing. Patients are very used to doctors making diagnoses based on blood tests and imaging. This is not the case with lupus. It is more of a gestalt diagnosis which is EXTREMELY difficult to explain to some patients in itself, and it doesn't help that the clinical presentation of lupus can be confusing. Lupus is not made by a single antibody test. Someone may have a positive ANA or even a positive anti-Ro antibody and STILL not have lupus!
To use the pneumonia example again: the entire clinical course of pneumonia from start to end is generally 10-14 days. It's easy to make such a diagnosis. The presentation of lupus can evolve over 5 to 10 YEARS! It is this reason why this diagnosis as well as other things like Multiple sclerosis are very difficult to explain to patients. Patients will often say, "My doctor doesn't know what's happening to me." or "My doctor is baffled!" This is not the case. An experienced person trained in internal medicine +/- rheumatology will often very well suspect a collagen/vascular disease early in the course, but can not commit to ONE diagnosis because the entire clinical course has not manifested itself.

I just wanted to give the medical side of things because the diagnoses like these are clearly VERY frustrating for patients--especially when they're not clear--but it's also a dilemma for clinicians as well. Not all diagnoses can be made in a day.

Last edited by harka; 02-16-2009 at 12:43 PM.

 
Old 02-16-2009, 12:49 PM   #9
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Re: Ana patterns

Thanks for this e-mail. These are the four I have.

Hematologic (leukopenia)
I have a rash but it does not spare nasal folds
positive ANA
photosensitivity
I don't know what number 11 means

My rheumy said the rash points more toward lupus than rosacea. The only thing is that it doesn't spare the nasal folds.

 
Old 02-16-2009, 06:38 PM   #10
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Re: Ana patterns

Quote:
Originally Posted by Postie View Post
Thanks for this e-mail. These are the four I have.

Hematologic (leukopenia)
I have a rash but it does not spare nasal folds
positive ANA
photosensitivity
I don't know what number 11 means

My rheumy said the rash points more toward lupus than rosacea. The only thing is that it doesn't spare the nasal folds.
My rash covers all of my face and it's over the rest of my body.
The rash does not always fallow the pattern of cheeks and bridge of nose.

 
Old 02-16-2009, 06:42 PM   #11
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Re: Ana patterns

Hi Allisonlynn:

Do you have Lupus?

My rash is on cheeks and bridge of nose. But it doesn't spare the nasal folds.

 
Old 02-17-2009, 12:09 AM   #12
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Re: Ana patterns

Postie & Alisonlyn, Dr. Daniel Wallace covers a wide range of lupus-specific rashes in his lupus hardcover, i.e., malar, discoid, SCLE annular, SCLE papulosquamous (psoriasiform), tumid, bullous, etc.

What I'm trying to convey: because a rash is neither discoid nor malar does NOT rule out its being *some form* of a lupus rash.

For me, informational articles did more harm than good, because back then most (including well-known organizations) failed to mention SCLE rashes and Ro-lupus---or even the so-called "discoid variants". That's why I suggest that people with rashes peruse full-length BOOKS, not articles. Articles are condensed, by definition.

Had I known there were rashes other than discoid & malar, I'd have sought other doctors much sooner. A rash is an "opportunity" in a way, as it opens the door to biopsy + immunofluorescent stain tests (assuming the dr. is aggressively pursuing all avenues of thought). All I can say is that I hope you both keep trying for answers that fit your symptoms. Good luck! Sending best wishes to you both, Vee

Last edited by VeeJ; 02-17-2009 at 04:55 AM. Reason: correct poor word choices

 
Old 02-17-2009, 01:03 PM   #13
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Re: Ana patterns

Quote:
Originally Posted by Postie View Post
Hi Allisonlynn:

Do you have Lupus?

My rash is on cheeks and bridge of nose. But it doesn't spare the nasal folds.
Yes I do have Lupus. I am on 50 mg. prednisone and 125 mg. Imuran.
As well as taking the Wellbutrin XL.
I do not seem to be getting any better so I wondered if anyone out there
may have had a Lupus flair while on Welbutrin.

 
Old 02-17-2009, 01:04 PM   #14
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Re: Ana patterns

Quote:
Originally Posted by VeeJ View Post
Postie & Alisonlyn, Dr. Daniel Wallace covers a wide range of lupus-specific rashes in his lupus hardcover, i.e., malar, discoid, SCLE annular, SCLE papulosquamous (psoriasiform), tumid, bullous, etc.

What I'm trying to convey: because a rash is neither discoid nor malar does NOT rule out its being *some form* of a lupus rash.

For me, informational articles did more harm than good, because back then most (including well-known organizations) failed to mention SCLE rashes and Ro-lupus---or even the so-called "discoid variants". That's why I suggest that people with rashes peruse full-length BOOKS, not articles. Articles are condensed, by definition.

Had I known there were rashes other than discoid & malar, I'd have sought other doctors much sooner. A rash is an "opportunity" in a way, as it opens the door to biopsy + immunofluorescent stain tests (assuming the dr. is aggressively pursuing all avenues of thought). All I can say is that I hope you both keep trying for answers that fit your symptoms. Good luck! Sending best wishes to you both, Vee
Thanks for the advice

 
Old 02-17-2009, 02:27 PM   #15
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Re: Ana patterns

Quote:
Originally Posted by VeeJ View Post
Postie & Alisonlyn, Dr. Daniel Wallace covers a wide range of lupus-specific rashes in his lupus hardcover, i.e., malar, discoid, SCLE annular, SCLE papulosquamous (psoriasiform), tumid, bullous, etc.

What I'm trying to convey: because a rash is neither discoid nor malar does NOT rule out its being *some form* of a lupus rash.

For me, informational articles did more harm than good, because back then most (including well-known organizations) failed to mention SCLE rashes and Ro-lupus---or even the so-called "discoid variants". That's why I suggest that people with rashes peruse full-length BOOKS, not articles. Articles are condensed, by definition.

Had I known there were rashes other than discoid & malar, I'd have sought other doctors much sooner. A rash is an "opportunity" in a way, as it opens the door to biopsy + immunofluorescent stain tests (assuming the dr. is aggressively pursuing all avenues of thought). All I can say is that I hope you both keep trying for answers that fit your symptoms. Good luck! Sending best wishes to you both, Vee
VeeJ, in retrospect when you were having symptoms of SLE, were the skin rashes the only symptoms you were having, or did you have other manifestations? Secondly, if you were having other manifestations, were there doctors who disregarded SLE as a possibility because you didn't have a classic discoid/photosensitivity or malar rash?

 
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