sjogrens also comes with additional symptoms like joint problems etc etc, so that could explain it all, plus the ANA. Has anyone suggested a lip biopsy ? I read someplace (but could never find it again) that the higher ANA's tend to be associated with Sjogrens, but who knows.

Sometimes, as frustrating as it is, all that can be done that is to follow a person over time and see what develops. Your symptoms certainly are suggestive of something autoimmune going on. The good news is that in terms of treatment it doesn't really matter if they come up with a dx or not, as these diseases are treated symptomatically so you can still receive all the treatment that you need even if you are undiagnosed. I have a cast iron dx, but am still treated symptomatically as that is really all that can be done.

cheers

raglet

I found a really good set of pictures of typical nail medical problems....

http://hooked-on-nails.com/naildisorders.html

This link mentions that a T-cell process may underlie psoriasis.
http://emedicine.medscape.com/article/1107949-overview

My husband has moderate psoriasis and it cleared up with Dovonex and
Aquaphor. He does not have nail issues yet. But his grandfather had
terrible nails after his stroke. On all his fingers!

Thanks for the pics. At first it looked like oncholysis, like on the Dermznet site.....now it looks like the psoriasis one on this site you posted. The whole darn finger above the DIP joint hurts like $%^&. It hurts worse behind the finger in the palmer aspect, so this crud is somehow affecting the joint. Anyway, thanks for looking at it for me. I have 2 more weeks to wait for the derm deities to tell me it is yet another rare and benign condition. If you know what I mean.

Also to the prior poster to MRSD...yes, lip biopsy is very positive as were all the eye tests....as was a biopsy for neuropathy and myopathy, also lungs have reticular changes, flunked a ton of autonomic tests and have cardiac abnormalities. So it is not unexpected that the ANA would be high. It has been high before. The CD4 T helper cells and lymphocytes are also high. I am wondering if I need more IVIG? Or if they need to add something else, but what that I can tolerate....that is the question. It is Sjogrens without the blood marker....which is a disese, but, not my Lyme without the blood marker, that is a non-disease. Which makes me wonder where these doctors heads are when they come up with these blood marker ideas. Thanks for your thoughts. I know a lot of brain power has over the years gone into helping me solve my dilemma.

In the end, it appears that autoimmunity was the cause of my idiopathic small fiber neuropathy. I think even Glenntaj narrowed that down to autoimmune mimicry from the Lyme ( which could also be called sarcoidosos, neurosarcoidosis as easily).

Treatment is all pretty much the same.....I am sticking with IVIG, as it has done the most good, but it will be a fight. I do believe my dose needs some increasing but not at the risk of losing what I get. I may have to add some other T cell hammer that I can tolerate.

I am absolutely exhausted to the point I refuse to feel guilty for laying around and for even being bedbound here and there. I do have 'good' days. I am closing in on my next IVIG, so this may be my issue....that or I ate too many peeps.

Pardon my ignorance here. My recent ANA test was negative, as was testing for Lupus and Lyme. Can someone explain what a negative ANA means? Does it cover specific autoimmune conditions? Thanks....

You don't have any antinuclear antibodies. Those are found with most of the autoimmune diseases. They tested you for those things to see if an autoimmune condition was causing your neuropathy or condition (I don't know what your condition is). If it is a ratio of 1:40 or less, it is considered negative....it titrates up to 1:1280 or if they put a > sign in front, it means they still saw immunoflorescence at a dilution of greater than 1,280 and it could be much higher, but most people don't get up to 1280, so they don't bother....in other words, >1:1280 means you have as high of an ANA as they expect to ever see.

It is non-specific which means, it says only, 'you have an autoimmune disease" and gives no info as to which one.

So they test for other ones. There are the usual rheumatic ones and then there are neuro ones, and if I had the umph to irritate my neuro I would have him run those....but I have no umph. My Anti-RNP/SM was within normal limits but closer to the higher limit than low. That one is for MCTD.

Lyme is obviously negative. As some one who had a perfect case of Lyme and has a negative titer now....man, show me some one with a positive case that has not had it done at Igenex...Yes, mine is + from Igenex. So ruling out Lyme with a blood test, only gives the medical community some kind of comfort. It may mean nothing.

Lupus is usually ruled out on the basis of your ANA titre....how high it comes in. Keep in mind they titer it by about 40. So 1:40 is negative, 1:80, 1:120, 1:160 all the way up to >1:1280....are possible results. They look at that and then your complements, C3, C4, C50 and make a decision on if you look like it could be Lupus. Also, Lupus has other symptoms such as Malar Rash. I have a low C4, depending on which lab is used....so I look kind of Lupusy now, but because I had a bad looking minor salivary gland, and dry eyes, they somehow decided it was Sjogrens...but seronegative, back when this started.

Now they don't know what to call it. The sicker I get, the less they seem to know about it....HMMM. Eventually a smoking gun will show up. Actually, I should not say they know less, they know it is autoimmune....at one point it was 'idiopathic', then it was 'hereditary'.

Finding the cause of a small fiber neuropathy can take years, even a decade.

Also ANA is not stagnant. It can move from low to high.

I hope that helps. Answers don't usually come real quick for many of us. You will learn a lot about a lot!!

hi guys

I hate to be pedantic, but it is definitely quite possible to have an ANA that is higher than 1:1280 - I myself have had ANA's 1:2580, and have heard of people having ANA's in the 5,000's. Actually, I myself have never heard before of a lab that stops titrating at 1:1280, but it seems that this particular lab does.

My thinking would be that they don't think it is worth the expense of continuing to tirate beyond 1280, as increased levels don't mean increased sickness, so it is not medically relivant to know what the highest level a person would test out at. an ANA of 1:1280 is a good strong positive, so nothing is achieved by continuing to titrate.

Titres double each time - 40, 80, 160, 320, 640, 1280 etc so numbers get large very quickly.

I have had lupus since I was 12, so I have been tested on this scale for many many years. Also, there is a newer way of testing ANA's that gives a single number and a vastly different scale than the old ratio's.

Titres like 1:80 and even 1:160 are pretty much ignored by rheumie's, as they often occur in healthy populations who do not have associated disease. These false positives increase with age. Rheumies usually like to see an ANA of at least 1:320 to dx unless there are compelling symptoms or other antibodies that support a dx.

The ANA is a screening test and if positive further testing is done. The most specific thing for lupus is the anti-ds-dna antibody, and if present it pretty much clinches the diagnosis of lupus. Over 95% of people with lupus have a positive ANA, but most people who have a positive ANA don't have lupus, if you get my drift, as lupus is only one of a variety of possibilities if a person has a positive ANA.

Ok, that's my take on this stuff having been around the block a few times with antibody tests ..... my dx with lupus was made very easy by high levels of both ANA's and anti-ds-dna's, althought I have lots of other antibodies as well.


cheers

raglet

Hi Raglet,

Thanks for your take on this. The doc said, indeed, the ANA could be far higher, and he suspected it was. It was speckled.

I had an rnp of 16.2 on a scale of 1- 24.9, and I thought it had to be over 24.9 to be 'high', but I read that 0-15 was normal, and 15-24.9 was borderline and 25 and up high. But that is not what this lab or what this doc said. He ignored this totally.

Then the SSA, was 9.5, in the same range of 0-24.9. That seems lower than the Anti-rnp/sm. So why do they go to the seronegative Sjogrens? Hmm

My anti/sm was only 1.1

I have some other oddities with eosinophils and basophils, but they are not the kind that knock you out.

So my question on elevated ANA is really, what does it mean?? I have high T4 (helper) cells, and low T8 (suppressor) cells.

Does any of this ring a bell to you??
I had one ANA Elisa, perhaps that is the one number one, come back 2.57, which the doc said was quite high.

My history is hideously complex, and the major only symptom, I have not had in the connective tissue disease clusters, is malar rash. I am getting sicker and wondering when it is time to do the more toxic treatments. I don't have a life. My insomnia has now given way to horrible fatigue and sleeping. All symptoms seem to be getting worse, with the exception for a week after an infusion of IVIG. I am getting pretty depressed now and wondering how long this is going to go on. This year, putting in the garden, my family had to do most of it. I could not do it.

I have not tried anything too strong, because my neuro feels I will get sicker from it, which is a possibility. I have done very poorly with meds....what to do, what to do. I don't even fully know what I have. Do these repeated ANAs being high, definitely mean this is no doubt autoimmune.....or does this mean there is a possibility of inflammation that is not autoimmune?

My rheum is in a 'duh' mode. My neuro is in his, 'I am published in seroneg. SJS mode' and my Internal Med, who is my primary is the only one concerned, and she feels it looks like MCTD. I am starting to care less about what it is, feeling less guilty about sleeping, less guilty about disengaging, and more like throwing in the towel. Quality of life is hitting the skids.