Hello...I've been over in the peripheral neuropathy forum for about two weeks now, and thought I would find my way over here as well based mainly on a comment that one or two people over there made to me...My neuro issues are (knock on wood) almost totally sensory in nature, without motor involvement, and involve pain and tingling/abnormal sensation and/or numbnesss and yet increased sensation/sensitivity. Started in my hands, now also involves my face (on the left side, the cheek, teeth, sinus, eye, jaw, ear, etc. area). Also have pain in the lower jaw on the left side that seems more swollen-glandlish, ENT pressed on a specific spot on the one side (where I've had pain for years) of the floor of my mouth and I nearly wanted to scream, he said it was the "sublingual gland" area or something like that. He also said the back of my throat looked really dry. He did an MRI (w/ and w/out contrast) of the area to rule out cancer or stones or such, it showed nothing and his guess is it's some sort of "backed up" or inflammatory issue and recommended I drink more water, and massage the area to keep it from getting backed up (it hurts like hell to touch in there, I will NOT be massaging it).

I also tend to have VERY dry eyes. REALLY dry eyes. When first diagnosed with dry eyes years ago, I had punctal plugs put in. They didn't do anything. Zip. Nothing. In fact, when I subsequently more recently went to another eye dr., she was like "wow, your eyes are really dry" when looking at them...five minutes after I had put eye drops in, *with* punctal plugs in. The one time I felt I had any relief from my dry eyes (even partial) was when one eye doc put me on something called "Lotemax" (some steroid eyedrop) for two weeks. Sadly, she said you can't stay on it long than that, and my eyes got way worse again once I came off it.

Someone over on the peripheral neuropathy board asked if I had ever been tested for Sjogren's, after hearing I had sensory neuro issues and dry eyes, and I thought I would come over here to learn more about how I would go about getting tested for it and what the tests are. Also, while I have never been specifically tested for Sjorgren's (or any other autoimmune conditions such a lupus, etc.), I have had two or three (over a period of several years) normal SED Rate tests, two or three (over a period of several years) normal thyroid tests, and one normal c-reactive protein test. (I think it's b/c of my normal SED Rate tests, in fact, that none of my doctors has ever done any other tests of any kind on me for autoimmune stuff).

Because I've had multiple normal SED Rate tests, should I figure I can rule out Sjogren's and other autoimmune conditions? Or should I get other tests done, and if so, what kinds, and what kind of doctor should I go to in order to get them done?

Thanks!

Aliya, you don't need a positive sed rate or CRP to be diagnosed with autoimmune.

Your primary care can screen. ANA (anti-nuclear antibody) would be the first test. S/he may be unwilling to do more than that. If that's positive, you should be referred to a rheumatologist for more specific testing. The rheumy could prescribe Plaquenil, which may help with dry eyes/nose/mouth etc.

My sed rate didn't become positive until 6 years after a positive ANA.

Your opthomologist should have done a Shirmer's test (strips to determine how much moisture in your eyes) and can do Rose bengal stain (determine if damage to cornea due to dry eyes) and other tests to screen for Sjogren's. It would be useful to bring this info to the rheumy on first visit.

If you are having dental problems - eg increased plaque, difficulty keeping teeth clean - be sure to tell dentist. Biotene rinse and toothpaste helps a great deal.

My second rheumy did a lip biopsy in his office, not enough material for a good test. My advice is to be choosy about this test, you don't want to have to have more than one. I've seen recommendations online that it not be done in the office.

It's a frustrating condition, all these specialists don't communicate well. If you want good care, insist on getting copies of all your tests and hand carry them to each doctor you see.

Hope this is helpful. Best of luck to you.

J
UCTD

After coming down with dry eyes, mouth and pn (sensory mainly), my doctor sent me to a neuro. After a lot of testing I finally went to Mayo in Rochester Minn. Mayo states "sero-negative rheumatoid arthritis and sjogren's along with nerve damage from Sjogren's). I wish I could say all is rosy with me but they have managed to keep me stable (most of the time).

I would definitely have your dentist and eye doctor chime in on this. Then a good rheumatologist. If you live near a teaching hospital, that would probably be a good place to start.

pm me and I'll give you the address for a good sjogren's forum. Or search for my posts and one of them will refer to it I'm sure.

Billye

Would an ANA test be a good place to start? I have never had one, no one has ever bothered as I keep having very low (ie, very normal) SED rate tests.

Hello Aliya !

I found this about diagnosis at wikipedia (perhaps you have already read it... )

Here it is in case you (or anyone else) havent.

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Diagnosis

Diagnosing Sjögren’s syndrome is complicated by the range of symptoms a patient may manifest, and the similarity between symptoms from Sjögren's syndrome and those caused by other conditions. Nevertheless, the combination of several tests can lead to a diagnosis of Sjögren's syndrome.

Blood tests can be done to determine if a patient has high levels of antibodies that are indicative of the condition, such as anti-nuclear antibody (ANA) and rheumatoid factor (because SS frequently occurs secondary to rheumatoid arthritis), which are associated with autoimmune diseases. Typical Sjögren's syndrome ANA patterns are SSA/Ro and SSB/La, of which SSB/La is far more specific; SSA/Ro is associated with numerous other autoimmune conditions but are often present in Sjögren's.[4]

The Schirmer test measures the production of tears: a strip of filter paper is held inside the lower eyelid for five minutes, and its wetness is then measured with a ruler. Producing less than five millimeters of liquid is usually indicative of Sjögren's syndrome. However, lacrimal function declines with age or may be impaired from other medical conditions. A slit-lamp examination is done to look for dryness on the surface of the eye. Salivary gland function can be tested by collecting saliva and determining the amount produced in a five minute period. A lip biopsy can reveal lymphocytes clustered around salivary glands, and damage to these glands due to inflammation.

A radiological procedure can also be used as a reliable and accurate way of diagnosing Sjögren's syndrome. A contrast agent is injected into the parotid duct (of Stensen), which is a duct opening from the cheek into the vestibule of the mouth opposite the neck of the upper second molar tooth. Widespread puddling of the injected contrast scattered throughout the gland indicates Sjögren's syndrome.
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Also, there is lots of info in the Sjögren's Syndrome Foundation website here

Hope that helps and good luck !

Hi Aliya,

I am only recommending this because of some of he symptoms you described are similar in nature to mine and I recently was surprised by what my doc discovered.

My dry eyes and neuropathy symptoms are viral in nature. Specifically caused by HSV-1 virus for me but for others it can be the caricella virus.

Ask your doc to do a HSV-1 and VZV IGG and IGM antibody test. If they are both elevated especially the IGM then you you might also have viral issues. It sure has done a number on my nerves.

If they are high they can put you on a anti-viral med and it helps. Now I am working on getting my nerves back to normal.

Good luck

HI,I was diagnosed with Sjogren's Syndrome 16 years ago. You might want to see an oral medicine specialist. The area under my tongue was so sore that I could not bear to have anyone touch it. I saw an Oral Medicine Doctor at a University teaching hospital and he explained the mechanics to me. When your mouth begins to dry out, your tongue becomes "hyperactive" and moves around your mouth all the time searching for moisture, trying to clean your mouth, etc. The muscles underneath your tongue become so sore and painful from all this activity that you may even be unable to speak properly. I was prescribed an antiseizure/antispasmodic drug that has helped me immensely. It keeps the tongue still and alleviates alot of the soreness in the mouth.I also discussed this situation with the head of study at another university who prescribed the same drug. I have been using it for sometime without any side affects. I would get an appointment with an oral medicine specialist ( they are medical doctors-not dentists) and perhaps you too can be helped with the pain in your mouth. I send you a hug. I know how difficult it is.