[davidl]

ANA tests and titre levels, how likely would you say that a test result at the highest titre, mine was 1:2560, is a false positive? In other words, that there is not an autoimmune disorder present?

I have been diagnosed through 2 skin biopsies with small fiber neuropathy. Historically, I might have a few weeks at a time, or even with lots of luck close to a couple of months, where the symptoms are barely present, and then WHAM! It can just come on with avengeance.

Mine has been diagnosed as "idiopathic". I have had, as far as I know, all the specific antibodies tested and none have come back positive. Have also had a salivary gland biopsy that did not test positive for sjogren's (I have dry eyes and mouth frequently in these flares).

I do have psoriasis for what that's worth.

Right now I am in an excruciating flare. And that's when mind starts to really wonder what in the world is causing all this.

I would just think that that high of an ANA (it's my understanding that most labs don't have any titres higher than this), almost has to mean there is something of significance going on of an autoimmune nature.

One final note: my ANA has been tested several times previously and was always consistently positive, usually a 1:640. But the last time it was checked it was this 1:2560.

Thanks so much for any input on this.

David

[en bloc]

I would definitely say there is something autoimmune going on. Other than the titer, what was the pattern (speckled, homogenous/diffuse, centromere, nucleolar)??

As for your dry mouth/eyes during these flares. These can be present with neuropathy, but of course most common with Sjogren's. I'm curious about your lip biopsy...what was the exact result/report? Did they mention ANY acinar damage, inflammation, and/or ANY lymphocytes?? What score did it receive?

Do you have any arthritis/joint pain? Have you been assessed for joint fluid (associated with inflammatory arthritis), like psoriatic arthritis?

I assume you have seen a rheumy. What do they think is going on?

[Healthgirl]

I can only tell you that I am in the same boat. ANA was 1:640 speckled and a diagnosis of SFN w/ autonomic problems and no found cause.

[davidl]

en bloc,

Thanks for the response.

My most recent two ANA tests are as follows:

most recent: ANA Pattern #1, Homogeneous; ANA Pattern #2, Speckled
Anti-Nuclear Antibody Titer #1, 1:2560; Titer #2, 1:2560

2nd most recent: same patterns as above, Titers 1:640

Also, here are the diagnostic notes from my salivary gland lip biopsy:

"Minor Salivary Gland Tissue with slight Lymphocytic Infiltrate. Focus Score: 0"

"There a few small cluster of lymphocytes, all of which are less than 50 cells."


Finally, I have been seeing a rheumatologist at Duke. But I feel like she has kind of given up on me for lack of a better way to put it. She knows that I have major problems with my small fiber neuropathy but she doesn't seem to think there's enough to say that it's autoimmune based. Or else, she's just not taking it seriously. I was switched over to her after my original rheumy at Duke left to go to a private practice. The original rheumy had said that she was suspicious that there was an autoimmune component to my symptoms. I am seriously considering switching back to her.

Thanks again to you, or anyone else, for your input on this.

David

Originally Posted by en bloc

I would definitely say there is something autoimmune going on. Other than the titer, what was the pattern (speckled, homogenous/diffuse, centromere, nucleolar)??

As for your dry mouth/eyes during these flares. These can be present with neuropathy, but of course most common with Sjogren's. I'm curious about your lip biopsy...what was the exact result/report? Did they mention ANY acinar damage, inflammation, and/or ANY lymphocytes?? What score did it receive?

Do you have any arthritis/joint pain? Have you been assessed for joint fluid (associated with inflammatory arthritis), like psoriatic arthritis?

I assume you have seen a rheumy. What do they think is going on?

[en bloc]

I think you should entertain another rheumy opinion (whether you go back to the first, or seek out another).

Your ANA is tell-tale of autoimmune...just need to figure out which one. I would also suspect your SFN is directly related to your AI disease. And the sooner you figure this out, the sooner you can consider treatment geared toward autoimmune (like IVIG, steroids, Rituxan, Plaquenil etc). Unfortunately, the longer you wait on treating autoimmune related neuropathy, the lower your chances of reversing damage.

My personal opinion on lip biopsy, is if there is ANY lymphocytic infiltrate, then there is obviously an autoimmune process going on. Lymphocytes are NOT supposed to be present. It may not be enough for positive Dx (YET), but it certainly is indicative of an abnormal process. Just a thought.

BTW, how long have you been dealing with this? It may be that your at early stages and that may be why your biopsy is not showing completely positive.

Any other symptoms: joint pain, fatigue, rashes, GI problems, etc??

What are you doing for mgmt at this point?

[davidl]

Thanks, en bloc.

I've been dealing with this for around 5 years or so. In addition to the psoriasis I get on my elbows, knees, and toes, I sometimes get little crusty rashes just under and to the left of my nose. I have a fair amount of acid reflux issues and sometimes bloating and constipation issues. I also have dry eyes, dry mouth sometimes, and bladder issues.

One interesting observation I've made is that when my feet are burning, my bladder acts up. When my upper legs are burning, I have dry eyes. Strange.

I have been on lyrica for a couple of years now...300 mg a day. Plaquenil for over a year and a half...400 mg a day. I take 20 mg a day of Cymbalta, but I think I will up it to 40 to see if it helps with the burning.

I also have been offered an 8 week trial of prednisone by neurologist where I start off at 40 mg a day for two weeks and then go to 20 mg a day for 6 weeks before tapering down. I have not done this.

July and most of August I was fairly symptom free. Or things were very mild at least. And then it was like someone hit a switch around the beginning of September.

I have asked previously about IVIG, but the docs always seem to say try the prednisone first.

I have been asked to be referred back to my original rheumy because I feel like she at least gives serious consideration that something of an autoimmune process is going on. Now whether she can help me is another story.

Thanks for your thoughts on all this.

David

Originally Posted by en bloc

I think you should entertain another rheumy opinion (whether you go back to the first, or seek out another).

Your ANA is tell-tale of autoimmune...just need to figure out which one. I would also suspect your SFN is directly related to your AI disease. And the sooner you figure this out, the sooner you can consider treatment geared toward autoimmune (like IVIG, steroids, Rituxan, Plaquenil etc). Unfortunately, the longer you wait on treating autoimmune related neuropathy, the lower your chances of reversing damage.

My personal opinion on lip biopsy, is if there is ANY lymphocytic infiltrate, then there is obviously an autoimmune process going on. Lymphocytes are NOT supposed to be present. It may not be enough for positive Dx (YET), but it certainly is indicative of an abnormal process. Just a thought.

BTW, how long have you been dealing with this? It may be that your at early stages and that may be why your biopsy is not showing completely positive.

Any other symptoms: joint pain, fatigue, rashes, GI problems, etc??

What are you doing for mgmt at this point?

[en bloc]

I'm glad to hear you are already taking Plaquenil. You should consider the steroid trial. It will help determine the inflammatory nature of this and if the steroids will help. You will definitely know one way or the other within 8 weeks (probably less time).

The IVIG will be an option for you in the future. It is not uncommon (or unreasonable) to have you do the steroids first. IVIG is extremely expensive and all other options should be tried first (my IVIG runs well over 30,000/month).

Keep in mind that if the steroids help and you continue with a longer term course, you can repeat the skin biopsy and determine if it has increased nerve fiber density or show positive changes in morphology. Of course, this can also be done after a 6 month course of IVIG for the same reason. This is one of the best attributes of the skin biopsy...repeat testing to gauge improvement/progression.

Hopefully your rheumy will reconsider the autoimmune aspect of this and treat accordingly. I think your making the right choice. Keep us posted please.