I think this term is worth a google. It is the alternative name proposed for Sjogren's.
If you google epithelial tissue, you will see how invasive an attack on the epithelial tissue of the body could be. This tissue is located in many regions of the body, external and internal....not just 'glands'. It is in the gut (mouth to rectum), the kidney (distal renal tubules), blood vessels, anything with 'mucous membrane' etc. You will see that it has NO blood supply but only a nerve supply, which is interesting given the link to neuropathy.
Epithelium gets it nutrients by diffusion by connective tissue.
A disturbance in the epithelial tissue of any organ could cause profound effects on the body....for example, distal renal tubular acidosis can cause destruction of bone. You name it, if the organ system has epithelium in it, or is dependent on epithelium for function, it can be affected by this.
This makes far more sense than trying to explain 'exocrine' dysfunction which is only a part of it.
As for how to diagnose it, I would think one would need serum markers OR a biopsy of tissue to infer systemic involvement, and justify systemic treatment with all the risks it involves.
Interesting. I pulled up one article that said the name, Sjogren's doesn't seem to cover the complete manifestations and most point back to the epithelium.
My first question would be how to test (biopsy)? Are blood markers even defined yet? Would they be the same SSA & SSB?
Back to biopsy...when they do a lip biopsy, could they biopsy the surrounding epithelial? Am I even thinking of this in the right way...that the tissue surrounds the glands, organs, etc?
If so, then couldn't they biopsy the epithelial in many different places/organs? It seems this would make diagnosis not only easier, but more precise.
Maybe this link helps answer the question...It's kinda long and complex, but the last paragraph seems to sum it up.
http://docs.google.com/viewer?a=v&q=cache:XDuTVwR8l0MJ:sicca.ucsf.edu/LSG_bx_Grading_SOP.pdf+salivary+gland+biopsy+lymphocytes+periductal&hl=en&gl=us&pid=bl&srcid=ADGEESgqsJlm7DXhGA9OnrAYPaaL6_82TN9ng-0JY_U_YZhxhJKbMmvanO6eWD572GZiuUU2FjsxyitDpafeVMRNs8wL1CWsgJ7PRZj4eIGats4SD86Dx_ghI1PbJHbu7PBFkaFkXDyU&sig=AHIEtbTbWuzGG1E9E3TmDtmzBsw3-Rbx3g
OOH My, that is quite a web address!
I think they do labial salivary since it is the easiest?
I think they will identify a number of antibodies not just SSA and SSB.....seems like Sicca comes with many AI diseases.
There is a big article on Sicca and lip biopsy in relation to MG.
I wonder too, if they could just do a needle biopsy of several organs and figure out if this is the culprit. If so, Epithelitis would be rather serious if systemic, IMO.
Video (need subscription for full topic) but gives good details:
http://hstalks.com/main/browse_talk_view.php?t=196&s=196&s_id=23&c=252
http://www.google.com/m/url?ei=SY4TTfjUKoLmqQPxy5CAAQ&q=http://www.danskreumatologiskselskab.dk/tekster/orientering/SS-clinical%2520wo%2520links.ppt&ved=0CBcQFjAC&usg=AFQjCNHJCgK63wRHzCA43cJddkxF4P2H2A
http://www.google.com/m/url?ei=Oo4TTeDaAYmyrAOu-oqAAQ&q=http://www.danskreumatologiskselskab.dk/tekster/orientering/SS-clinical%2520wo%2520links.ppt&ved=0CCQQFjAG&usg=AFQjCNELf7igScVTIP-T7SzQaDcw8dKeUQ
http://www.springerlink.com/content/w851311246g07870/
http://onlinelibrary.wiley.com/doi/10.1111/j.1601-0825.2006.01292.x/abstract
http://onlinelibrary.wiley.com/doi/10.1111/j.1601-0825.2006.01292.x/abstract
YOU TUBE VIDEOS
http://www.youtube.com/watch?v=4RerelUHKF4 This gal has a lot of videos on the subject
http://www.youtube.com/watch?v=-PIcNX5SJ0s&feature=fvw
Okay, this will likely sound stupid: What the difference between epithelitis and FLS (focal lymphocytic sialadenitis) or FSLS (focal sclerosing lymphocytic sialadenitis)? The epithelium is the tissue around the gland...not the gland itself, right?
Of note: my lip biopsy does not show FLS or FSLS. They note that the acinar structure is completely lost and replaced by sialometaplasia elements and chronic sialofibrosis. These areas are diffusely infiltrated with lymphocytes and plasma cells, but due to the structure loss there are no aggregations of 50 or more lymphocytes. So although mine only "grades" at a level 2 on the greenspan (due to no foci), because of the completely loss of acini and degree of fibrosis, the findings are consistent with Sjogren's at end stage (their words). There is no mention throughout the detailed report of any specific testing on the epithelium or surrounding tissue. They also didn't test for Coxsackie involement (which would have been interesting).
I am certain there are other markers. I actually give extra blood at each visit (at Hopkins) for testing/studies of new markers. And yes Sicca comes with many things, but Sicca may not mean Sjogrens.
The needle biopsy is sort of what I meant in regards to precisely diagnosing epithelitis in a specific affected organ (if there is already an identifiable function problem). This would help to define the involvement so treatment can be tailored specifically with better results.
The article you linked should be the one and only guideline used for lip biopsies.
Anita, it sounds like your salivary gland has been obliterated by something. My neuro says the lymphocytes indicate inflammation, and that would be my take on it. Your case, like mine, isn't textbook. I am still not convinced by a lot of the 'diagnoses' we get. My mouth is not seriously dry (eyes are awful, but I still make tears....don't know where they are going tho!)
As for the girl on the youtube video....I can't follow much of what she is saying....maybe it is me, but, I dunno....I did catch the words hypochondria, (which she said she is cured of, and klonopin.) Great. I appreciate people making videos on diseases, but.....The Greek doctor is good. He does a lot of research on SjS.
This whole labial gland biopsy thing is up in the air....sure you find out if 'something' is going on in the gland....but, without more specific histology....I don't know.
There are so many ubiqutous viruses out there that could cause this. If you want to read something disturbing, read up on Simian Virus 40. SV40 for short. I, for one, am fairly certain I was 'innoculated' with it, given the time frame. I will have to look up Coxsackie and get more info on it. Been a bit preoccupied with holidays.
I agree, they should biopsy more sites, or a site other than the labial glands. I wonder if they could do the distal renal tubules or if that is too hard. I would not want any one digging in my lacrimal glands. Just for info....my nasolacrimal gland on one side is huge....has gotten blown way up...show up on CT as a big black hole. This isn't seen often and the ENT didn't know what to make of it. It gets air in it and I can play my eye like a musical instrument.
I am very much interested in this because I supposedly have a form of Interstitial Cystitis, the doc called it urethral syndrome. Basically my urethra hurts/burns. Others with IC have horrible bladder pain and are in the bathroom 60+ times a day. I had a cystoscopy twice and both times my bladder appeared fine but there was redness/inflammation at the base of my bladder neck where it joins with the urethra. The skin in this area is epithelial, to my knowledge. I've had these problems since after giving birth to my 2nd child in fall 2007. My eye problems started getting worse in 2003. My mouth has been getting worse over the past year. I have no doubt that it's all related and I now question whether I actually have IC or if IC/urethral syndrome is a symptom of Sjogren's or some kind of epithelial lupus. A high proportion of women with IC also have Sjogren's.....it just seems to make sense. I wish I could just be a guinea pig for Dr. Faustman.
I think Sjogren's use to be defined to just "dry eyes & mouth", then they started realizing the involvement was more widespread so it seems to have become a "catch all" for patients with a collection of symptoms that 'included' the dry eyes & mouth but now obviously systemic to involve multiple organs. I guess this is where the autoimmune epithelitis comes into the picture. It seems to define the nature of the disease a little better (at least for me).
Basically I think all autoimmune diseases are interrelated (hence overlap) and there is one component that triggers the antibodies to go nuts...then they head in different directions (Lupus, RA, Sjogren's, diabetes, Thyroid --or a combination).
Although many have a hard time getting diagnose, I still think the label, Sjogren's, gets applied way too often for what is likely simple Sicca caused by something else.
After reading many posts and details provided, I think there are several members here that i doubt really belong in the Sjogren's category. I would go as far to say that I've questioned my own diagnosis at times. My lip biopsy clearly shows almost complete destruction, but does that really mean it's from Sjogren's? I have far too many neuro related problems that surpass the 'dry' problems any day. And I'm sero-negative. Sometimes, it's just doesn't make sense.
Inga: I really am curious of the layman description of epithelia. Is it just the 'covering' tissue? Does it always 'surround' organs, glands, etc? What about the in urethra like shortstuff described...that would be ''inside" the organ, so to speak? Would the sheath or myelin covering nerves contain this epithelia?
This autoimmune epithelitis would make more sense (I think) than autoantibodies attacking nerves, organs, etc directly. They would have to go through the epithelium first, right?
I am posting this reference, since it really describes epithelial tissue well. After reading this, it clicked in my head that if SjS IS REALLY an Autoimmune Epithelitis, as suggested, it does explain a LOT of the problems....and I wonder, since epithelial tissue does not contain any blood vessels for nutrients, it absorbs it from connective tissue, and since it DOES contain nerves, that does tie it to neuropathy and connective tissue disease, by anatomy alone. If epithelium isn't getting proper nutrients for some reason, would not the nerves in it suffer similarly? Just a thought? (My mind is really a bit gone today, and one of these days when I am feeling a bit less 'holiday' stress, I will try to reason this thru.)
I TOO question what is going on with my body and diagnosis. I do feel this diagnosis is too liberally applied to people and I fear that people simply will 'settle' for whatever name is tossed out there or be 'happy' when their misery is given a name, because it is hard to be miserable with no name to the malady. Ten years ago, when I found the Sjogren's diagnosis, when I had dry eyes and other misery, I thought for SURE it had to be that! I didn't want to hear that it wasn't this! Now I don't want to hear it IS this!
My goal is to find the exact cause of this, so I can try to stop or remediate it in myself. I know my cause is likely different than in others. If the criteria are not exactly the same in research cases, the researchers will come up empty handed, as they have so far. There are WAY too many conditions being labelled SjS and, I may be one of them. I would venture a guess 50% or more of the posters on here are improperly diagnosed, and improperly treated, and may get damaged due to it.
I have always said, risk versus benefit on the drugs used, either to manage or to attempt 'treatment'.
Anita, you had the high CD4+/CD8 ratio as well? Right?
It's hard to keep all these details correct....pffflua..... the hard drive that was my brain is a bit full.
Shortstuff, Bingo, I had the same thing for years. It is bloody miserable. Mine started when I was about 21 years old. The first time I was in nurses training in Rochester and went to Mayo clinic. They did the silver nitrate installations which I had to hold in my bladder for about 1 1/2 hours. I also had a urethral suppository of hydrocortisone and a product that I am having trouble remembering right now. I think it might have been called furacin. They don't use it anymore that I know of.
Both these things helped. They burned like heck and were miserable but they helped. I had to have that done a few more times. The area that is affected is the trigone. This is the little triangular area of tissue right above the urethra that tells you that you have to urinate. When it is inflammed (not infected really) it hurts all the time. Nights are terrible also cause your back hurts then.
I had that a lot and doctored off and on trying to find help where I lived. I had one doc who knew what it was and treated me with the urethral suppositories before it got bad and I felt better.
I had to go several other times to the Mayo Clinic and would have to go everyday for one week. I would have Argryol (sp) every day after they had dilated my urethra with what felt like a water hose. The dilatation was to massage the little glands in the urethra which emptied them of any possible bacteria. The last thing in the appt was the urethral suppository.
The last time I went I was dilated with a size 34 "sound" as they call the metal tube. This is big. I could feel the tissue, hopefully scar tissue tear when they did it. After having that done for the week (the size 34 was done on the Friday) I told hubby that is the last time I will be doing that cause they will have me peeing in my pants. I was afraid they would wreck the sphincter and I wouldn't be able to control my bladder.
The interesting thing is that my urine was always negative. Whe they would do the cystos they told me that it looked like a big scab right above my urethra and was more of an irritation/inflammation. I had learned over the years that taking the pyridium (turns the urine orange) helps if you can start it early enough. Doesn't cure it though.
Also learned that Naprosyn helped a lot. Aleve is the generic. When I finally saw my immunologist for the first time I mentioned this and he told me it was autoimmune related. For some reason I have not had it the past ten-15 years. I think the autoimmune moved elsewhere in my body.
The other interesting thing is that I think my mom had Sjogrens but was undiagnosed. She also had this bladder thing and suffered so much. It is really almost unbearable. I told my hubby that I walked around clenching my teeth, literally, because of the pain. It can really ruin life. Cranberry juice doesn't help, antibiotics don't help. THe suppositories did help but they took them off the market many years ago.
Mayo clinic has one of their pharmacies compound this for them only. Sort of unfair I thought!!! This issues is called Trigonitis and most GP's have never heard of it. I don't know that it is related to anything else. It might just be that area is prone because of the type of tissue. I also think that intercourse does not help it one bit.
Hope you can get things resolved. It might be that Plaquenil would take care of that problem. Plaquenil has a good anti-inflammatory effect. Irish ;D
Inga,
Yes, the last time it was checked (a ways back) the ratio was increased, but there were no morphologic features of lymphoma.
I really think the neuro involvement is the key in my case. I'm actually looking forward to an upcoming MRI of the brain...then neck and lower spine. I have been unable to have one with the pacemaker (since 2004), but Hopkins has a new protocol for pacemaker patients to have it done. Dr. Birnbaum just got me approved (after months of trying) for the procedure which he says will require a cardiologist and anesthesiologist to be in the room. I don't know what it might show, but sort of hope it helps to put some pieces together. There is lots of coordination to get all these docs in one room for this, so don't know when it will actually occur, but they're thinking in January.
There have been some very unusual labs over the years, to include positive cryoglobulins (several in a row---years ago). They are negative now though.
One recent lab (IMP-Impression Serum) noted the following text: There is an IgG lambda monoclonal gammopathy
The next page/lab (IFE Serum) said: One band of restricted electrophoretic mobility is present in the IgG lane with a corresponding band in the lamda lane. The band is clearly evident and migrates away from the anode.
I was thinking of asking Nathan or Baklavas about this, because I have NO clue what it means (even after an online search).
I think you and I have many findings & symptoms in common...as well as our opinions that question our diagnosis.
Oh, and back to my other questions. Please tell me if my descriptions of epithelial tissue is correct. If it is, then small needle biopsies of this tissue around affected organs will likely hold answers to many of our questions.
I'd be interested in thoughts from Nathan and baklavas on this too.
A reading of "epithelium" that I found describes this tissue as the covering of both internal and external surfaces of the body including its organs.
This could make it easier to do biospies at various sites?
Inga, your topic is great. The discussions among you, Anita and baklavas are really stimulating. This is the kind of thing I was hoping for at this site. Many thanks for posting it.
Don't know if there's any connection, but read that the mumps virus is in the same family as Coxsackie.
'Bye.
Lily
Anita, I would asume that the epithelial tissue is part of the glandular structure.
http://www.otohns.net/default.asp?id=14646
I would wonder if the structure of the salivary gland would deteriorate without innervation, regardless of a systemic inflammatory process. The citing above indicates that autonomic nervous system involvement is crucial to the development of the gland, then would it not also be involved in the deterioration of the gland as well.
I am also wondering if diagnosis of SjS on the basis of labial gland biopsy, is not as accurate at purported? If the glands are deteriorating due to denervation the epithelium will also suffer, since it contains nerves, and as these nerves die, they would kill epithelium and interfere with labial gland structure as well, producing what appears to be SjS. So I feel there is THIS kind of result. Then there is the Epithelitis result. Two distinct kinds of 'inflammation' of the gland, from different reasons, both deemed Sjogren's.
I would feel more comfortable with my diagnosis if I had SSA or SSB (I don't.) I do have nerve degeneration in my intraepidermal biopsy, which is 'epithelial' tissue.
Inga,
I think you've opened a new door. I wonder if what you've found is a perfectly valid explanation for my lip biopsy showing almost complete destruction of the Acinar structure. As you said and found, the autonomic nervous system plays a crucial role in the development of the gland. Therefore, knowing my severe autonomic neuropathy (for almost every function), this could explain the findings on biopsy.
This would also mean that the lip biopsy may NOT be as accurate, since other factors could be changing the structure of the glands.
I believe you have some significant autonomic dysfunction as well, right?
Well, now if I could just find an explanation for the autonomic dysfunction.
I would be interested in those who are sero-negative, but positive lip biopsy...and that have autonomic dysfunction.
You know, Birnbaum is a research nut...I may throw this his way to see what he thinks. I should be seeing him after my brain MRI (which I'm more and more interested in now).
I do have one question for you. Which came first, something destroying the epithelium (at gland level) which destroyed the nerves (and affected autonomic function) and subsequent gland structure...or something is destroying the autonomic system (widespread) and then affects the epithelium and gland structure?
Maybe Nathan and Bakvalas will pipe in also.
Very interesting find, Inga.
I am not sure which came first, the epithelitis or the nerve damage.
I have the added issue of a +ANA, but -SSA/SSB.
Epithelial tissue is innervated but does not have blood vessels.
I have never been convinced that Sjogren's can stand alone as a disease without the SSA and SSB serum markers....if one doesn't have those, one has a Sicca Syndrome of unspecified origin OR UCTD in the presence of a +ANA, IMHO.
Now the neurological damage could be inflammatory, in essence, similar to CIDP, but, of the small fibers, not myelinated fibers. Whether or not this precedes epithelial damage, or is cause and effect, I don't know. But looking at what this does to the salivary gland, it is not comforting to think about other organ damage.
Anita, one more thing....
I have found I am running very low blood sugars, which could be reactive hypoglycemia, from food with a high glycemic index. I believe hypogylcemia is just as damaging to nerves as hyperglycemia. It could be that.
This does not explain the ANA being high for me.
Also, the acidemia, I am experiencing lately.....not ulkine what a diabetic gets, but slightly different.
This could be metabolic?
In your case, the +ANA should definitely put you in the UCTD category. Being that I'm sero-negative across the board (don't even have the +ANA), I don't think I fit yet. Frankly, after absorbing what we've just discussed about the lip biopsy and what might also cause that kind of damage, I don't know where I fit...no-mans land??
About those low blood sugars: If you are having low blood sugar frequent enough to cause nerve damage, then I think it might go way beyond food. Have you had your liver function checked?
And no, it doesn't explain the +ANA. I think the UCTD---and epithelitis (regardless of which came first--because they are both likely present)
Can't the epithelitis be a cause of the dRTA (and acidemia)?
Yes, the epithelitis could be a cause of dRTA and therefore the acidemia. I would think biopsy of other sites could yield evidence of inflammation, or 'itis' of the epithelium. I would think some researcher would want to explore this. Also, I would like to know why this is so unresponsive to most treatment.
Could the answer to your last question (unresponsive to treatment) have anything to do with excessive B cell activation?
Do you think some get relief with depleting B cell treatments (rituxan, etc) because it stops the apoptosis (I think that's the right word, but not sure) so that tissues, glands, organs, and even epithelium can heal and/or rejuvenate?
The jury is still out on the monoclonal antibody drugs for SjS neuropathy....I am not inclined to risk it. Interestingly, my B cell count is normal. It is just the CD4+ that is out of whack, if I am correct. I don't know enough about this yet, to assume that the B cell proliferation is due to CD4+ cell elevation. I am not sure that B follows T?
I think I'll sit back and watch the new drugs/treatments for a while myself. I must say I'm interested in learning more about it though.
Isn't a high B cell count associated with leukemia?
Are blood tests for the B cell count the same as the detecting B cell activation (associated with autoimmune dis.)? If so, then why not use this test as a "marker"? Can someone have a normal B cell count, yet the "activation" be greater than normal?
Can cell "activation" or apoptosis be determined in a test?
Please pardon my ignorance for some of this stuff...I'm brain storming. LOL
I am not up to snuff on all the T cell, B cell stuff. I believe my B cell count is WNL (within normal limits). It is just my CD4+ (which is helper cells) that are out of whack. T or helper cells are associated with AI disease.
I don't think we (medicine) understand how this process works, and it seems that the B cells are targeted by current monoclonal antibodies. I am just not confident that these are hitting the mark with the issue that you and I have. I think more information will emerge as the humane genome is further studied. Monoclonal antibodies are still relatively new and we just don't know long term side effects.
I can't remember if you ever tried IVIG, and I realize you have kidney issues, but I wonder if they are of the type that preclude IVIG? IVIG has, in general, less dire consequences than the monoclonal antibody drugs. I am far from convinced that IVIG is the solution for this either, but, for me it is probably the only option.
Interesting info! And, I DO love to google. ;) Thank you.
CAT
I did IVIG for 11 years...and did quite well on it during that time period.
In 2007, I (out of the blue) got a severe case of aspectic meningitis (CSF white cell count over 700)...so no more IVIG. The only change was that I had to stop for a while before that time due to insurance bitching. My neuro got approval under CIDP and the meningitis occured on the second day of the loading dose. I spent 5 days in the hospital and 30 days recovering afterward at home.
There are numerous articles about B cells. Not really just "B cells", but B cell hyperactivity (BAFF). There seems to be a difference. Much of it is way over my head. Birnbaum was the first to tell me about B cell activation and his belief this was behind the trigger (so to speak) for sjogren's (including neruo problems) and why these new B cell depleting treatments were working (rituxan, etc). Of course his explanation was very brief and I truly had no idea what he was talking about until about 2 years later while doing more research.
http://www.medscape.com/viewarticle/561880 (notice the mention of both epithelial cells and T cells)
Not being a medical professional, I can't access most articles (other than a few abstracts posted), but you can certainly check them out. There are several listed to the right of this abstract that look interesting.
They have just barely touched on cell (all--B, T, Epithelial) involvement and rushing to cell depletion (monoclonal antibody drugs) might be reckless if they don't understand the mechanics 'completely'.
I have had triamcinalone injections into hip bursae, and it must get systemic and I feel better, much better for a few days....however, I can't have steroids since I have such bone issues....I am not convinced I want to risk PML from a monoclonal antibody, so IVIG seems the only option right now. I understand they are on this B cell thing right now...but, I don't think they full understand the process. For me, I am inclined to leave well enough alone, even tho, well enough isn't very good.
I think my days of steroids are over as well...unless something becomes life-threatening. I already have (and had for several years) osteoporosis at just 46. Last week I had a my third (annual) IV of Relcast since bisphosphonates and gastroparesis don't go together very well. I have not had any previous problems, but this one caused a significant reaction and left me watching the clock for another dose of percocet for several days severe joint & muscle pain. Let's not forget that narcotics and gastroparesis are not much fun either and I avoid them at all cost...unless crying is the only alternative...LOL
Lesson learned: Never do any infusion (regardless of history) the week of Christmas....NEVER. LOL
I have not tried triamcinalsone. Cortisone injections for joint pain work well for me (at least a couple months worth)...is this in the same class? Does it work the same way?
I was real disappointed about the loss of IVIG...there was a change in symptoms and severity after I stopped.
Now I'm doing nothing but Plaquenil (and my assorted AN meds)...and have recently added neurontin for the nerve pain (and no luck as of yet but still working up to a higher dose)
Triamcinalone is basically a steroid...a kind of cortisone.
I am at the point that I think the complexity of my condition exceeds the ability of medicine to manage it. I am also, just flying by the seat of my pants.
Anita,
I got aseptic meningitis years ago from IVIG as well and thought I would never go back on it. Years later, this past September, I tried it again with a much lower dose and a different brand. Got headache but not as bad and now manageable with premeds and a medrol dose pack after my one day a month infusion. The good news is that I am tolerating it and seeing improvement in my near symptoms.
I have spoken to neurologists who say that no one really knows if such large doses of IVIG are always needed and in my case I am seeing benefit at a lower dose.
I also take IV reclast yearly . Recently had a bone density test after 2 years and there was actually some improvement.
Ruth
I don't think my dose was too big (50 grams monthly---but broken into two day doses). I can't remember what my loading dose was when I had the meningitis (but I'm going to go hunt it down now that you got me thinking).
I actually (last two years) got reduced doses every 10 days (two days in a row)...because I had to go sooooo slow to avoid reactions. Only 60 ml/hour top speed...lol I also did pre-meds.
I don't think my neurologist would go for it again...700+ white cell count is a lot more than a typical "reaction".
I need to do another bone density...it's been a couple years since the last one and I'm curious if this is helping. Maybe I'll forget about this reaction by this time next year...lol
Inga,
I think sometimes I just don't fit into any category...and baffle those (docs) trying to put me in one. I keep them guessing...and hopefully learning.
Also, what is your IVIG dose?
Inga,
I have to go back to the epithelium once again.
Does the brain contain epithelial tissue? Would an MRI be able to pick up epithelitis?
My EEG showed bilateral temporal lobe dysfunction and I have significant cognitive dysfunction (just now confirmed with neuro-psych testing). I'm wondering if epithelitis could be the causative action. Also wonder what other neuro problems can be explained from within this brain of mine...like autonomic neuropathy. Any ideas if AN can be defined/pinpointed from something in the brain?
T cells are related to bone marrow and the thymus gland. Only 2% are supposed to emerge and circulate. I wonder if they are working on targeting these cells....T helper cells differentiate to several other kinds of cells....is it possible that one or all of the T cell derivatives causes this syndrome. Interestingly, most of us with the high CD4 counts have bone issues, kidney issues related to dRTA, and also neuro problems. It is interesting your CD4/CD8 ratio is high but ANA is negative....mine is high but ANA +. I intend to ask the neuro when I see him, about the CD4+/CD8 ratio. I also have a noisy, enlarged nasolacrimal duct which I hope they may be able to biopsy....I am wondering if it is inflammed, or has atypical tissue.
http://en.wikipedia.org/wiki/T_cell
I think I'll ask him to run another CD4/CD8 and ANA (it's been a while since either has been tested).
I do have to wonder how some meds effect these labs. There really isn't a good reference for what labs are effected...and by what meds.
I think they have narrowed it down to the B cells (which I guess is a derivative of the T cells...and NK cells). Odd that an old lab of mine noted I had undetectable NK cell activity.
Any thoughts about whether epithelial tissue is in the brain? Or whether actual epithelitis can occur in the brain and possibly cause neuro dysfunction (AN or otherswise)?
I have also had a test and had low or undetectable NK cells.
As far as I know, there is no epithelial tissue in brain. It is associated with 'lining' of organs which contain tubes or hollow spaces, or areas such as skin, mucous membranes, gut etc.
It makes sense that nerves dying in the tissue cause a degradation of the tissue itself.
Hmmm. I was hoping to connect more (brain, neuro, cognitive, etc) to the autoimmune epithelitis. I just don't think there is 2, 3 or more different things wrong...it's ONE thing that is causing the whole ball of wax. So it has to be something that can affect not only the exocrine system, but the widespread organ involvement and widespread neuro (to include changes/damage in the brain).
The search...and research, continues.
Anita,
My IVIG dose is 25 gms one day a month so you were getting twice as much as me per month.
Ruth
Thanks Ruth.
Inga, how much do you get (IVIG)?
Hi,
Anita, I get 30 grams monthly.
Also, have you checked out Autoimmune Autonomic Neuropathy....this is one of my diagnoses? It is possible this accounts for some Sicca.
Anita, I was doing some research on alpha synucleins, and I just happened upon this info.....CD4+ cells can mount a neuroprotective response in neurodegnerative disease. So essentially, that CD4+ count that is elevated, may not be a bad thing. Big hmmmm. IVIG would NOT hamper that response...it is the only treatment that wouldn't, since IVIG is immunomodulary. I am going to pass on any immunosuppression for now, until they identify exactly what my disease process is.
Interesting about the IVIG. I guess I was getting much more because I also had a IgG subclass deficiency. I wonder about the incident of recurring A. meningitis...especially if I were to be at a more (neuro) therapeutic level. Not sure Birnbaum, would be game (not sure I am either...needs more thought). The subclass def. doesn't even seem to be an issue any more (not sure why).
Also interesting is the CD4+ response. I agree, not a bad thing after all. Certainly another confirmation of neurodegenerative disease (wouldn't need to respond if not present).
I too will likely stay were I am for now.
I wonder if the neurodegenerative issue is at the base of it. Research Autoimmune Autonomic Neuropathy and Pure Autonomic Failure. I think I am in one or the other, as far as a grouping. Both would include Sicca. AAN would possibly result in the +ANA. On the other hand, there could be two disease processes, but like you Anita, I feel that is unlikely.
Denervation can lead to impaired salivary gland structure -as can be seen in a lip biopsy, such as loss of acinar cells..
but, to explain lymphocyte infiltration loci when found > 2 according Tarpley score,
one would pronounce that denervation is the result - not the first chronological causal event.
Otherwise put, I am unaware of denervation - nerve degeneration per se lead to cell infilitration.
However: in SS, not only infiltration and destruction occurs but also apoptosis of gland cells. A(t lest one) reason for the established apoptosis could stand in the loss of excitations from nerves due to their degeneration (my devise). From this standpoint, the denervation (the AAN in whole) could further contribute m- but as it is caused already by the prim or sec SS.
Kindly indicate any flaw as you find it.