|
|
|
|
|
Sjögren's Syndrome |
||
|
|
||
| |||||||||
In my case I have dry eyes (kcs), dry mouth, positive antibodies, positive biopsy and the possibility of peripheral neuropathy. I have heard that "Secondary Sjogren's" (caused by something else) can only be diagnosed with a biopsy. Does anyone have input on that?By my interpretation, it goes like this. There are two types of Sjogren's Syndrome - hereafter abbreviated to SjS :
I am currently believed to be a primary, and I *understand* that Primary SjSs are more susceptible to MALT and certain other lymphomas. [Get Reference] Secondary SjS would typically have SjS in conjunction with rheumatoid arthritis, lupus (SLE), fibromyalgia and/or other similar conditions. Both primary and secondary SjS can have central nervous system (CNS) implications, bringing on things like the sjogie "brain fog" which can't really be described easily. [Get Reference] Diagnosis of the presence of SjS is as above and is normally carried out by rheumatologists following a careful capture of your history, doing blood work, testing tear production via a Schirmer's Test (blotting paper in the eye) and is usually confirmed by taking a sample of minor salivary glands from the inside of the lower lip - the so-called lip biopsy - and examining it under the microscope. Once you have a SjS diagnosis the question of whether it is secondary is dependant on tests for other rheumatic or connective tissue disorders. The testing process for these will vary. So, the diagnosis of secondary SjS isn't confirmed by biopsy as such, but the test for SjS as a whole usually is. Which "branch" of SjS you have is confirmed by presence of other underlying conditions. Do you think my dry mouth (really, really dry and annoying) could be related to the MALT or the lumps under my chin? I am getting to the point where I need something for the dry mouth.Dry mouth is a common symptom of SjS (and I know exactly what you mean, I have the same) but this can also be caused by a wide number of other situations including caffeine and medication. If you have dysfunction in your salivary glands, that will almost certainly influence a dry mouth condition. You may also experience other problems with dryness. Common examples would be dryness of the airways and digestive tract (leading to a distinctive cough and sensations of a "knot" in the Adam's Apple area), dry skin and scalp, and vaginal dryness or discomfort. The crucial part of your question - whether MALT is implicated - depends on whether you have MALT in those glands or whether they are swollen as part of the normal SjS disease process. For me, that had to be determined by a PET scan, fine needle aspiration and ultimately a surgical biopsy to remove parotid tissue for microscopic analysis and histology. If your glands are free of lymphoma then it's likely that your dry mouth condition is due to other causes. I would be tempted to suggest you approach a rheumatologist for a further discussion on SjS and perhaps be re-tested. It can be difficult to spot and is often hidden by other conditions or can masquerade as them. Negative blood work in itself might not be sufficient to draw a conclusion either way; you may need further tests. If you have dry eyes, dry mouth and swollen glands then I would certainly be leaning in that direction but I stress that I am not medically qualified. As to management of the dry mouth condition, there are a number of moisture replacement therapies available. I personally use and can recommend the Biotene range which includes toothpaste, mouthwash and an oral gel. Between these products I have dramatically improved my dryness situation and night times are much more bearable. Incidentally I have no commercial interest in this range, I'm just a consumer. More information on SjS can be found on http://www.dry.org/ or via the yahoo groups lists SS-L and TalkSjo. Information on Biotene is available from http://www.laclede.com/. Another useful link and discussion of primary SjS versus lymphoma is http://www.medstudents.com.br/reumat/reumat4.htm which states: "Malignant or pseudomalignant lymphoproliferation may be a prominent part of the illness, specially in primary Sjögren’s syndrome." I hope some of this is of interest. ~ Graham in England
Resources:
|
