Running the gamut from sudden hepatitis to hemachromatosis! Usually about/within 4-15 days after my infusions [every 4 weeks] All dissapated after a couple of weeks tho. WHEW!
I Mention these as they were, I think linked to infusions/infusion responses and test timing. Not to mention stressors about a whole bunch of other med issues, as yet, unresolved. Know where you are coming from!
Curiously, I've not had a ANA test in ages! I think it mite be time for me to sort of have a serious ASK? NO? KICK ME PLEASE!
As for your results? All I can say is down right 'unusual'!
Not to mention scary to boot.
All I can suggest is to quiz the docs about any specifics and 'what can I do's' For the future tho, get copies of those test results and try to become a hematologist? Poke poke poke Let them know you aren't a doormat...tho I suspect they've gotten that impression by now.

Take a good look also at whatever IG brand you are using-web up the prescribing information..then feel free to pick their minds using the 800 phone #'s! I have found these #'s very useful at times...and they have access to the good stuff-you know what I mean! This is NOT a time to by shy! ASKING AND KNOWING are key to getting the best treatments that are available!
's - j

Hi J

The doc did not say it was due to the IVIG. He said, he wanted to check with the neuro giving it just to make sure. He seems to think it is just the typical very sky high ANA, due to my seronegative Sjogrens, altho, there is no such thing as seronegative Lyme.....if you get my drift. i was just wondering if any one had ever heard of this kind of thing happening...you know, that "one in a million normal reaction" to something. I think I have at least 5 one in a million, rarities. Darn, still can't win the lotto.

This is the 3rd high ANA, 2 of them have been off the chart. It doesn't really help define WHAT this is, only that it is inflammatory.

I would be highly doubtful that an elevated ANA would happen from IVIG. It is supposed to modulate the immune system. I expect what is causing the high ANA is also causing the high CD4+ T helper cells.

Hmm, so that must mean this PN is certainly inflammatory.

I think they should name this disease after me....the pulmonologist said that would be fine. She was having issues with finding Sarc in the scar tissue of my lungs.....not enough for a granuloma??? Let's see, that is the size of a grain of sand. Well maybe my fingernail will have better diggings than my lung....I don't want my lung dug around in anyway.

This new rheum I have concurred that he never saw a more impressively infiltrated minor salivary gland. There are too many lymphocytes to 'score' it.....basically it looks like more lymphocytes than salivary tissue.
Ah yes.

Life is confusing. But my new adorable 7 week old grand daughter is keeping me happy. I get my 'baby fix' when I get blue. My son and his wonderful wife indulge me to the max. I can cuddle and coo. Then when she poops I had her over.

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!!