Author Topic: Anyone else have salivary glands that are completely damaged?  (Read 3338 times)

sleeeepy

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Just got back from Pittsburgh where they did a Sailography where they shoot dye into salivary gland opening in mouth...sigh.. Doc says that I don't have a reserve of saliva in my cheek when he squeezed it like most people have.  He also said that the dye went in some of the way , but would not go in the rest of the way meaning that my glands are severely damaged and really don't work ANYMORE.

 He said that he will not know completely until my films are reviewed from the xrays they took but it doesn't sound good.  I have had symptoms for 15 years with NEGATIVE BLOODWORK  for Sjogrens and just recently had a positive ANA result..the only positve test so far. Oh and I had a NEGATIVE lip biopsy 7 months ago.

 Go figure people...just wanted to let everybody know what I found out...just more proof that basically relying just on bloodwork and biopsy is NOT a good idea.  Shashi where are you???  I know she was planning on leaving this site because of her negative tests...hopefully she reads this.  I think I am done crying for now cause my tears are irritating my eyes and making my eyelids swell.   Take care....Mary

My official diagnosis today was Mixed connective tissue disease(with Sjogrens symptoms dominant) and Fibromyalgia because they always have to throw that one in there.  I get the mixed connective tissue disease diagnosis because I am currently negative on the Sjogrens bloodtests and having only a positve ANA.
« Last Edit: June 09, 2010, 04:41:12 PM by sleeeepy »

Sarah

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Re: Anyone else have salivary glands that are completely damaged?
« Reply #1 on: June 09, 2010, 05:55:32 PM »
About 6 years ago I had a damaged gland in my neck.  My glands, at that time, would always swell.  This particular gland caused me great pain.  I could not turn my head as the pain in my neck was so bad.  My lip biopsy showed Sjogren's.  The gland was removed by Mayo Clinic in Arizona.  Sometimes they do not remove them unless you have severe symptoms and feel you cannot live with the pain.  Hope your doctor gives you a good prognosis.

inga

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Re: Anyone else have salivary glands that are completely damaged?
« Reply #2 on: June 09, 2010, 06:09:35 PM »
Usually for Mixed Connective Tissue Disease they require a certain ENA pattern for rnp antibodies.  MCTD is usually not diagnosed by rheumatologists in the absence of the rnp antibodies.  It is a definite marker for MCTD.  MCTD is a very serious disease on par with scleroderma.

For a positive ANA and negative ENA, they call it Undifferentiated Connective Tissue Disease.....because you have characteristics of many autoimmune disease, but a negative ENA.   

It is often confused by doctors.  Rheumatologists are notorious for de-diagnosing things.  My docs told me I had MCTD as well, but after researching it, I found it was closer to UCTD, altho, that could be ruled out due to a + lip biopsy, which I don't put a ton of credence into.  MCTD is VERY specific, like scleroderma, one needs these antibodies or the rheumies say, 'nope'. 

With UCTD, the +ANA on TWO occassions is enough and the ENA can be negative, as yours (and mine) is.

UCTD is not any 'less' of a disease, it is just ENA negative and means that you do not have the criteria to meet ANY established disease represented on the ENA.

There are many diseases which attack the salivary glands.  Labial salivary glands are not the same as the parotid gland....so something is definitely going on....Also, if I recall, you have PN?

Never the less, you are working toward an answer.

anita

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Re: Anyone else have salivary glands that are completely damaged?
« Reply #3 on: June 09, 2010, 06:29:39 PM »
I also have negative blood work, but my lip biopsy was more than just positive.  It stated the findings are consistent with a long standing inflammatory cell process, in which acinar structures are lost and replaced with sialometaplasia (scar tissue).  it went into more detail, but the last comment was the these changes are consistent with Sjogren's at end stage.  I never knew there was "stages", but I guess there is.  basically there is nothing left in the glands.

I have never had the sialography study...but don't need any more confirmation.  One day they will knew why blood work doesn't show positive in patients that clearly have sjogren's diagnosed by other means.  But like Inga said, there are so many diseases that effect the salivary glands, who knows what the end result is.  For now (until more research is done) I go with the Sjogren's based upon the lip biopsy...with severe neuro issues for added fun!!!

52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran

inga

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Re: Anyone else have salivary glands that are completely damaged?
« Reply #4 on: June 09, 2010, 07:49:05 PM »
Anita, you and I have a lot of similarities.  They have stuck with Sjogren's despite the negative ENA, due to the + ANA and also the wicked lip biopsy, which was 'highly infiltrated with lymphocytes'.  Lately tho, my eyes are horrible....on topical steroids now....I really buy the Undifferentiated Connective Tissue Disease theory, but many think it means, a lesser disease, and I disagree....It's the pits, with, characteristics of ALL autoimmune diseases, and the serum evidence of none!

Oh heck, you know how I feel.....the whole naming system needs redoing.

Beta

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Re: Anyone else have salivary glands that are completely damaged?
« Reply #5 on: June 10, 2010, 12:02:24 AM »
Sleeepy,

I am in the same bout as you are.

Sailography showed total damage of salivary glands and little damage of parotid glands.

Blood work NEGATIVE.

Lip biopsy NEGATIVE.

I used to have positive Shirmer test, now it is negative. As for positive tests, apart from proved neuropathy and positive sailography  I have nothing left! :)

inga

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Re: Anyone else have salivary glands that are completely damaged?
« Reply #6 on: June 10, 2010, 06:10:27 AM »
There are people who are ANA positive-----ENA negative----with positive lip biopsy----these are termed Sjogren's (but I and many others have their doubts.)  Many of these have PN by biopsy.  I suspect an autoimmune autonomic neuropathy, or Undifferentiated Connective Tissue Disease....or both.  In this group, salivary and lacrimal damage could be caused by damaged nerves or damaged glands due to inflammation.  (I am in this group)  This group also includes people with other seropositive autoimmune disease identified and sicca but negative SSA and SSB.

There are people who are ANA positive---ENA positive (SSA, SSB)----with or without Sicca and they are classically termed Sjogrens.  PN or no PN, these are 'certifiable Sjogren's by serum.

There is probably little difference between the above two groups in terms of symptoms.

There are those that are ANA negative, ENA negative and have a + lip biopsy or other test such as sialography--these are termed Sjogren's (but I have greater doubts)  Many of these have PN.  Some of these people may be prodromal, that is, on their way to developing either of the two above conditions and they may seroconvert to a +ANA.....or they may have this from the PN alone, if they have PN.  PN can for all its worth, look exactly like SjS.  A skin biopsy needs to be done on these folks to confirm PN.  Some people have idiopathic PN, that is, no reason found for the PN, and it is misery.  There are many people on forums with this kind of PN.

There are those that are fully negative on everything and have Sicca....they need to keep until they find a answer.  In the long run something may happen that points to diagnosis.

There is no black and white definition of what Sjogren's is and even what many other autoimmune diseases are.  One doc will tell you one thing and the next another.   It can take decadea to get all the tests on one side of the fence. 

sleeeepy

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Re: Anyone else have salivary glands that are completely damaged?
« Reply #7 on: June 10, 2010, 09:18:12 AM »
Inga and Beta, I am just confused because of all the research going on right now that says that Sjogrens can cause PN, but my ENA is negative, and my lip biopsy is negative, yet my ANA is positive just recently though because 6 months ago it was negative also. I have had symptoms for 15 years having the last two years being the worse.

So can PN cause a positve ANA all by itself? Just wondering where the PN came from if that is what I have by itself and can the PN damage my salivary glands so badly? I haven't really had that much PAIN or swelling in my glands....just mild discomfort and feeling of puffiness on both sides of my face around the jawline.

Wondering if major dental work can cause PN leading to sicca? I also have a feeling something in my brain is going on...I need a MRI of my brain and spinal cord so bad.   Take care .....Mary

inga

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Re: Anyone else have salivary glands that are completely damaged?
« Reply #8 on: June 10, 2010, 09:30:39 AM »
PN can come from a variety of causes, one of them is inflammatory, but often it is simply 'idiopathic' in that the docs don't know.

Yes, it can cause that much damage.  When any organ loses its innervation, it can lose blood supply and function.  It simply atrophies.

I can't remember if you had autonomic testing and the skin biopsy but if not, consider it.

It is a chicken or egg dilemma.  If you have fully diagnosed Sjogren's, including at least a + ANA, you can assume that inflammation is causing PN, however, if everything is negative, one would assume it is idiopathic PN causing sicca.

PN causes pain, causes fatigue, joint issues, autonomic issues and sicca.

One can have idiopathic PN, but one can have hereditary, toxic, and any number of reasons for PN.

Rheumatologists, in general, not always, but in general, use the ENA to define who has which disease.  They are far more strict.  Other docs will 'diagnose' these rheumatological diseases in people and often when you finally see a rheum, they will 'de-diagnose' you if you do not have the ENA criteria.  OR they will tell you that you have Undifferentiated Connective Tissue Disease if your ANA is +.  Keep in mind that Undifferentiated Connective Tissue Disease IS an autoimmune disease, with a +ANA and simply a negative or unfound antibody that does not show on ENA.   Yes, it is confusing.  However you don't want to get any treatment that is not indicated, since many treatments of autoimmune disease are pretty serious.  Most PN is not actually treated, just the symptoms are. 

It just takes time for all this to become evident and it is best to try to carry on and not think about it too much....hard, I know.