Have you been administered steroids by IV recently? My salivary glands became blocked. It felt like I had spider webs in my mouth. It was from receiving the steroids. Lots of liquids. Problem solved for me.
I was originally dx with Sjogren's and even though I thought that it couldn't possibly account for all of my symptoms I saw a pioneer in the study and treatment dr. Metzger at The University of Pittsburgh that assured me that Sjogren's did cover everything.
He actually got down right angry when people didn't know about Primary Sjogren's vs Secondary Sjogren's (which comes with another auto immune disease). Sjogren's can cause lesions in the brain and spine, inflammation everywhere and attack any part of your body that has water. It's amazing but that is almost the whole body.
The hallmark signs of Sjogren's that everyone seems to be familiar with are dry mouth and dry eyes but it can attack your nose, throat, skin, heart, kidneys, liver, lungs etc.
If you only have the dry mouth and throat & glands you should google Primary Sjogren's and go through the list and see if you are saying ah ha I have that and that so that you can get a better feel of the possibility. If you are answering no and no than maybe it is the Secondary Sjogren's and you still need to find the other auto immune disease.
The Oral Surgeon will more than likely want to do a lip biopsey to confirm. Having that result can make a huge difference deciding where to go next.
Good luck
Hugs,
Erin :)
Sjogren's is a perfect MS mimicker. It is one of the very few MS mimics that can put lesions in the spine and in the brain.
My mother has Sjogren's. The most common symptom of Sjogren's is dry eyes and dry mouth. This happens because of the autoimmune response attacking the moisture producing glands of the body.
There is several ways to test for Sjogren's...
Blood tests your physician may perform include:
ANA (Anti-Nuclear Antibody)
ANAs are a group of antibodies that react against normal components of a cell nucleus. About 70% of Sjögren’s patients have a positive ANA test result.
RF (Rheumatoid Factor)
This antibody test is indicative of a most often performed for the diagnosis of rheumatoid arthritis (RA) but is positive in many rheumatic diseases. In Sjögren’s patients, 60-70% have a positive RF.
SS-A (or Ro) and SS-B (or La)
These are the marker antibodies for Sjögren's. Seventy percent of Sjögren’s patients are positive for SS-A and 40% are positive for SS-B (these may also found in lupus patients).
ESR (Erythrocyte Sedimentation Rate)
This test measures inflammation. An elevated ESR indicates the presence of an inflammatory disorder, including Sjögren’s syndrome.
IGs (Immunoglobulins)
These are normal blood proteins that participate in immune reactions and are usually elevated in Sjögren’s patients.
The ophthalmologic (eye) tests include:
Schirmer Test
Measures tear production.
Rose Bengal and Lissamine Green
Eyedrops containing dyes that an eye care specialist uses to examine the surface of the eye for dry spots.
The dental tests include:
Salivary Flow
Measures the amount of saliva produced over a certain period of time.
Salivary scintigraphy
A nuclear medicine test that measures salivary gland function.
Salivary gland biopsy (usually in the lower lip)
Confirms inflammatory cell (lymphocytic) infiltration of the minor salivary glands.
My mother never tested positive through the blood test, but was diagnosed through history, symptoms, and confirmed through a lip biopsy that revealed lymphocyte infiltration and chronic inflammation. After years of having this disease her glands under her jaw line will swell like she has the mumps and she will have pain. She will also have pain from the parotids. She was also diagnosed with fibro this year.
Thank you all for your wonderful answers - this is so helpful. I have a follow up apt. coming up with my Neuro., I will discuss this with him. Then, about a week later I am due to see th Oral Surgeon.
Hi Fig65,
I don't believe we've "met" so welcome. I was told I had Sjogren's for 5+ years . The negative blood tests resulted in the rheumy and neuro saying 5% of Sjogren's patients are sero-negative. Took Plaquenil for years-no results.
Changed neuros and even the Ms neuro thought I had Sjogren's due to history - positive Schrimer test, swollen and infected parotid glands, joint pain, etc. Finally Ms neuro ordered a lip biopsy which confirmed once and for all that I did NOT have SS but I had MS. I only have 2 classic MS lesions on MRI.
My two cents,
Ren
I have dry mouth, eyes,nose and skin, asked my MS specialist and they already tested for Sjogrens when they were ruling things out.
I have like what feels like a hair in my mouth, could the steroids..huh?
meg
I have dry eyes and dry mouth and have been told by 7 Dr's I have definate MS but the MS Specialist is testing me for Sjogren's. I get the blood test results in Oct I guess. My PCP said YES based on my history he is dx'ing SS and put me on Evoxac which makes my mouth water almost too much.
Today I went to a follow up with my Opthamologist who did the dry eye test with the strips and said he would definately NOT dx SS. UGH what a confusing situation.
My regular neuro says SS can cause a lot of the MS type sx's I am having and also cause lesions. It is all very confusing to me.
I do hope you find relief. Keep us posted
D
Thanks so much, I appreciate all the input. So, the dry eyes/ mouth, swollen glands,etc... can also be a part of MS? This is so confusing. I have never had steroids, so couldn't be that. The thing that makes me keep going back to MS is the extreme heat sensitivity and how badly my symptoms flare up even after a very short time outside in the heat.
Rendean,
Sheesh! I'm so sorry to see you were misdiagnosed for 5 years!! The overreliance on diagnostics in the American medical community is causing patients such harm!! Seems like MDs now spend so much time in the classroom memorizing lists of symptoms and the use of diagnostics.
Instead of sitting in the med school classrooms, I wish student doctors were out in the field in continued intense interactions with patients who actually have various diseases and conditions - so that instead of having to try to remember what chapter IV in their text said about a condition such as MS, doctors would have an innate gut reaction to a patient's description of symptoms which, combined with a few tests (not the landslide we all seem to experience) would lead to faster and more accurate diagnosis.
In your case, your MDs just relied on testing. Diagnostic testing is the new idol at which many of our MDs worship. Got news for them: Many patients who are, in fact dying, can appear very, very healthy from their diagnostics. The testing may not be accurate due to sloppy or inaccurate technique. Or it may be completely accurate and still not elucidate the source of the patient's problem. But testing makes it certainly far easier on the MDs who just look at test results rather than listen to what the patient is telling them about their symptoms, it requires less time, and it can be presented as objective proof in a court of law that the patient was really okay (even though the patient was not okay) at the time of interview and exam by the MD.
Why don't we start a movement to revamp medical training in this country - getting med students out of their ivory-tower-classrooms and into the throngs of hurting humanity so they can learn about disease conditions and symptoms firsthand and better develop their gut-instincts that they can then combine with diagnostic input when diagnosing.
I'd really like to see this happen!!
WAF
One more thing: Are you sorry you ever went to a rheumy? I ask this because I am still trying to get in to see the one good rheumy in our area, but so far have not succeeded in getting an appointment. A test that was done by my primary MD indicates that I likely do have autoimmune disease which is why the consult with the rheumy was ordered.
Now that I read about your experience with misdiagnosis - apparently done by your rheumy's many diagnostic tests - I have to wonder if seeing a rheumy is a good idea for those of us with MS symptoms. Seems like others on this website have also rarely benefited from their rheumy's actions. Yet I realize there are many conditions similar to MS that maybe a rheumy could shed light on. Yet after seeing me walk, my new primary MD thought I should just keep seeing neurologists.
I feel like a hamster in a wheel!! What to do?
WAF