Well, well, who would have thunk it?

[ellenkerr]

It certainly has been an interesting day.  I went in to the oral surgeon to get my lip biopsy done.  The surgeon had been doing more research on SJ and had contacted my Rheumy and to make sure this biopsy would be textbook and nothing would be missed.  Well.....

after my lip was numb, he began making his incision and then I heard him say, "I can't believe this!"  He said when you pull your lower lip down and roll it out, you can see dozens of little bumps under the skin, which are your minor salivary glands.  He said most people have several dozen to over 100 along the lower lip.  He said mine were missing!  He found a few, but said it looked like all of these glands had atrophied.  He said they were so tiny and thought that they were only 20% of their expected size.  He said he took out a few more glands than necessary just to make sure there was enough tissue to biopsy.  I saw the little glands he removed and they were really tiny.  He said it didn't look like any of them could possibly be working.  He said the quantity of glands in that area should have been much more, and he never saw salivary glands that small.  I wonder if any of my larger glands are working or have atrophied?  Is this pretty normal for people with SJ?  He was so concerned that these samples may not be large enough for the lab to read them.  Alrighty then...

Any thoughts on this???  The surgeon and staff were so nice and very helpful.  In fact one of them called  me here at home a few minutes ago to make sure I was feeling OK and reminded me to call if I had any questions or problems.  They said they normally don't prescribe antibiotics unless teeth were pulled, however offered to write me a script if I wanted to take them just in case.  He also prescribed so great painkiller.  Its wearing off and time for a new dose, but I don't think I'm going to need it.  The swelling is getting pretty bad and it looks all purple, but I am icing it like they told me to do.

After that, I went to my opthamologist as a follow up to my vision problems.  I told him that we had been talking about my dry eyes for many years and have just been treating the symptoms, but suggested we test the eyes too, so it will be documented in case I need it.  On the 5 min Schirmer test, they were shocked.  The test strips showed almost no tears.  My dr said on a scale from 1-10, with 10 being the very worst it could be, he would rate mine at least 9.5!  He did  put plugs in my eyelids to see if that helped any.  He also did a split lamp test and will be documenting all of his findings in a letter, to send to my neuro, PCP and insurance company.  Does this sound familiar to any of you?

[Joe S.]

You mean there are supposed to be little bumps on the inside of our lips? I thought it was normal not to have any. That could explain a few things.

[ellenkerr]

I bet it does explain a few things   I wonder what causes these little guys to just wither up and disappear?  Could that be sj?  or maybe some other little oddity to add to my list.  Gotta love it.

Oh, about the biopsy... my lip looks really bruised and swollen, however the great news is that it doesn't hurt

[quietdynamics]

mizzy...it is so encouraging to hear that the Drs. attending you are listening and open to the information you have provided. Rock on girl...  I have given Drs. information as well. When they are long; the abstract with the link from Drs. who do research at SJS Centers.

FYI Here is a concise site re: The Physician's Guide to Laboratory Test Selection and Interpretation
(I will post in a new thread with other link)  http://www.arupconsult.com/assets/print/Sjogren.pdf

Perhaps later when your plate clears a bit, you could add your state to your bio/info,  as so many here are in need of Care with Drs. familiar with SJS...and you have engaged a strong, guided relationship   

I did not require a biopsy.

One of the Drs' from a SJS Center did talk about the need for viscous drops with the plugs. Quality of the tears matters. And the use of drops at bedtime followed by a 1/8" seal of ointment. And taking 81mg aspirin (I use generic coated..baby aspirin dose) to manage inflammation. Redness and swelling has abated since I started. 

[ellenkerr]

Thanks for the update, I will try to update my profile, at least to show where I live

[paisley62]

Hello Mizzy,

I am not a doctor, however, in my humble opinion your lip-biopsy experience illustrates the very essence of how Sjogren's Disease works on the body: what it actually is and does.

I saw my lip biopsy slide.  If the salivary buds were the size of yellow happy face with sunglasses    then each of these on my slide were surrounded by 50 to 100 lymphocytes, white blood cells of the immune system.  Each lymphocyte was about the size of one lens on these sunglasses    .     

So what I had were healthy, functioning, minor salivary gland buds, being attacked by 50 to 100 lymphocytes that were all pushing in on the salivary bud and trying to kill the salivary bud cells.

The lymphocytes are good at this, and they do kill the cells of the minor salivary gland bud.  The dead salivary gland cells get replaced with useless, fibrous, scar type tissue.

Therefore, not being a doctor, I would say that your minor salivary gland buds all got killed a long time ago -- the battle is over.  The functioning salivary buds are gone now, replaced by hard little bumps of fibrous scar tissue.

This is a gross over-simplification of the process, but that is what I assumed was happening on my lip biopsy slide.

Therefore I am making two predictions: first, that your mouth has been dry for some time now, and second, that you will have a very positive lip biopsy result.

The reason I tried to break this down into steps and explain this as well as I could, is that this is what I believe Sjogren's is - exactly what I saw on my lip-biopsy slide.  My immune system white cells are attacking the cells in the linings of my micro-blood vessels, killing the cells in that lining, and causing "inflammation".  The word "inflammation" means that a lot of immune system white cells have congregated in the inflamed area.  This is usually a natural part of the healing process, however, in Sjogren's, it is the war of the immune system white cells attacking healthy body tissues.

I imagine my tear glands, my "lacrimal" glands were similarly destroyed if you could biopsy those glands.  I think the left side of my heart is under attack, causing it to lose it's natural elasticity as the elastic heart muscle and heart tissue cells  are getting replaced by useless, stiff, scar tissue.  Needless to say this is causing several major problems with my heart.

My last CT scans of my lungs showed "linear" features associated with "fibrosis of the lung".  In my over-simplified, cartoonish understanding of Sjogren's, I just assume that those little lymphocyte white blood cells that I saw on my lip biopsy slide are now also attacking my lung tissue.  This will kill the cells that exchange oxygen with the blood cells, and cause progressive breathing/lung problems as time goes on.

My Sjogren's is progressive, moving around my body destroying selected tissues.  It seems to like destroying specific tissues in my Central and Peripheral Nervous System as well.  I do not believe that everyone's Sjogren's is progressive, and also, even if it is progressive, it chooses its own speeds to work at in different people, and many of the current medications in use can slow it down considerably -- by many years for some organs or specific tissues.

I thought this post was a good place to try to explain how I "picture", or understand what Sjogren's Disease actually is.  I know the reality of what is happening is infinitely more complex than my explanation, however, I believe my explanation is essentially correct and explains clearly and concisely what Sjogren's Disease is.

Now everyone knows how I personally understand why Mizzy might have atrophied salivary buds and dry eyes.

I wonder if other people "see" Sjogren's differently in their mind, or understand it in ways that are substantially different than mine.

I have additional cartoonish visualizations of exactly how Cellcept works, and how that compares and contrasts with, for just one example, how Imuran works.  These two medicines accomplish a similar thing that compromises the Sjogren's Disease attacks on our tissues at a cellular level by reducing numbers of B cells, however, they do it by two very different methods. 

If one has a doctor that you trust, then you don't need to be trying to visualize or figure out exactly what is going on with the disease, or exactly how the different medicines work, what is known and not known about the processes, etc. 

I increasingly just follow my doctor's advice, having FINALLY found a great Rheumatologist, and also a great Neurologist, both of whom I trust.  I don't expect them to be perfect, but each of them really is very good, and that is such a comfort after years of having to act as my doctor, because I couldn't get any doctor to acknowledge my symptoms and perform the appropriate tests, etc...but that is another story.

paisley

[ellenkerr]

Paisley,  thanks for the wonderful explanation of how sjs works.  I like it than you can paint such descriptive picture with words.  Sjogrens is not so easy to wrap you mind around,  so I love your cartoonish vision of the battles going on inside us. . Very clever grashopper!  I think you need to write and illustrate a comic book on autoimmne disorders.  That could be a hoot.  You know, there could be some money in that idea!!!!   If you do this, aSuper hero is involved, I definately feel it calls for a cape!!! ( Every Sjogrens superhero needs a cape!)

Thanks for enlightening all of us.  I sure hope you are right about my biopsy being positive.  I can't imagine any other reason for what they found.  I'll keep you all posted.