I chased the Sjogren's bus for 15 years. I have a highly +ANA-nucleolar, and the +lip biopsy, every sign and symptom including dRTA. Many rheumatologists will not even consider it as an option without a +SSA or SSB. I have been nailed with IVIG and IV steroids etc, and none of it helped with my worst symptoms which are all autonomic, including the dry eyes. My thought is, I am going to try to get scleral lenses for that, because I am freaking going blind. I have the diagnosis (negative SSA-B), but it has been meaningless for me. I won't discourage you from searching for an answer, but, it may not be Sjogren's and if it is, treating it doesn't always work, that is, if it is or isn't really Sjogren's. Rheumatology is one of the MOST disorganized specialites. I use the word disorganized because I don't want to call it what it really is.

I stopped my IVIG a few months ago, since it seemed to be making me more sick than not, after 3 years of it. It does wonders for some folks. I am not one of them I guess. But, I would not fault any one for trying.

I am curious tho, why there is such a profound increase in the number of severe dysautonomics and the LACK of solid research and lack of centers for treating this. Autonomic neuropathy is very serious and it seems that there is just no solid organization in terms of diagnosis and treatment, or should I say managment.

I am sitting in bed with over my head right now, so, take this post with a grain of salt. I don't mean to discourage you. Definitely get tested for autoimmune disease, but it is a whole 'nuther can of worms.

You're not discouraging me. I'm really fed up at having so many problems that no one seems to have answers for. I'd really like to know where this is going and I'm still clueless. I have a lot of autonomic problems too, but I'm not sure of what is causing them or where they are going either. Anyway, this is just another confirmation of something I already know and that is I suffer from some kind of chronic inflammation. If nothing else, it gives the docs another piece of objective evidence.

This is not enough information. The results should list a specific number of foci present in a 4 mm sq area (focus=aggregate of 50 or more lymphocytes, histiocytes and plasma cells). You should get a copy of the results.

"Chronic inflammation" is certainly a clue that something is going on, but it could be caused by many things...its the 'infiltration of lymphocytes' that makes it a Sjogren's diagnosis. The ENT's office may not have read the entire result to you (so typical for them to summarize on their own), so get a copy.

Glad you're seeing a rheumy.

Me too, I'm sure I can get a copy from them when I see them next week. In todays world, medical assistants call you with results and they don't have the training to explain results, only parrot what they are told.

Sarcoidosis causes the same kind of results on lip biopsy that you get as 'consistent with Sjogren's'. It's my thought, that if you can get serum correlation, you are on a better track to diagnosis. Many of the treatment for autoimmune disease are worse than the disease.

My doc recently told me I was too sick to have Sjogren's, and that IVIG would have helped by now.....which, was, my impression as well....sigh.

I strongly encourage you to keep pursuing diagnosis, because without a solid diagnosis, you can't treat. Your train may stop and you may get off at a few wrong stops, but, whatever you do, get back on the train!

I have exhuasted most options, it's possibly Sarc....(not all the pieces fit) or some hereditary or 'familial' dysautonomia, which has yet to be isolated on the genome, and unfortunately it doesn't seem like any one is researching it.

I just had blood drawn to check for HSAN III, which is THE Familial Dysautonomia, but, I am not confident that my heritage or ancestry is typical of this disease. Again....sigh. I am the closest symptom-wise to Familial Dysautonomia....but I have an elevated ANA. I miss the mark on all the other HSANs, so they didn't test for those. I don't like the idea of hereditary, however, it looks like they are treating HSAN III with oral Kinetin, pretty weird, it's a plant hormone!

I have gotten off at a lot of stops. The geneticist is pondering whether or not to have my genome run....that said, he says he has to find some one interested in studying it. Unfortunately, they could have had 4 generations but my mom died 2 years ago.

I'm going to work on eating some appropriate supplements, get the hole in my ticker checked out to see if it is making matters worse, and hope for the best, which would be things not getting a whole lot worse too fast.

I saw the rheumy yesterday and my results aren't stated in the form you indicated. The results state that there is interstitial mild chronic inflammation includes a few plasma cells and while the inflammatory changes are not specific, they could be seen in the setting of Sjogrens if the clinical circumstances are appropriate and it further states that several lobules of involvement are noted. They want to prescribe plaquenil but only after my opthalmologist okays it. So I guess I have it.

There are different grading systems. The one I was referencing is the Greenspan scale which is used at Hopkins (where I had mine done) and many others (but obviously not all places). As long as it looks for infiltrates & inflammation and the findings correlate to your symptoms, which it did.

Yes, you should have a baseline eye exam (to include color blindness and field of vision checks) by an ophthalmologist before starting Plaquenil...and every six months after. The damage to the eyes from Plaquenil is extremely rare, but none the less important to be checked for regularly.

Plaquenil is not a quick fix. It can (and usually) takes up to 3-6 months before you notice any improvement.

So glad you're getting some answers. You may find other unusual symptoms have an answer now. There are many problems associated with Sjogren's. They may address your PN differently now with this diagnosis.

I am curious about that. I asked alot of questions about other problems I have and their relation to this and I didn't get any firm answers. I'll be seeing my neurologist in a couple of weeks and I'm curious to see what he says about it as well as my other doctors. I was seeing my opthalmologist every 4 months prior to this last time when he was finally comfortable seeing me in 6 months since using Restasis is keeping the blepharitis at bay. I also have pigmentary dispersion syndrome in both eyes which they have been following for a long time so they are being extra cautious over my eyes and thats fine with me. I have enough to deal with already.

I have a vitreous detachment. It happened a year ago, and my vision never returned to normal. It's slightly better than when this happened.

Frankly, I am wondering why they are not prescribing more Boston Scleral Lenses....my thought is to look into those. Insurance will be an issue and the cost is also an obstacle.

I couldn't use Plaquenil....I tried, but I itched to high heaven. Sigh.

Ouch on the vitreous detachment. I have vitreous degeneration. I wonder if its the same thing. I have a long history of intolerance to meds and I worry that I may not tolerate plaquenil also. My list of medical allergies is growing and I now wonder if thats related to this in some way as well. I'm not familiar with the Boston scleral lenses, what are they for?