I do have dry eyes and dry mouth (less frequent than the eyes). I also have some bladder dysfunction. It's odd, but when my feet and lower legs are really burning I tend to have the urinary problems such as urgency and difficulty emptying. However, when my upper legs are doing more of the burning I tend to have more problems with dry eyes. I am at a loss as to why.

I had a salivary gland biopsy a couple of years ago or so and the results were considered insignificant by docs. Here are some notes from it:

"Minor Salivary Gland Tissue with slight Lymphocytic infiltrate. Focus score 0."
"There are a few small clusters of lymphocytes, all of which are less than 50 cells."

I do have psoriasis, that has been confirmed through biopsy. Have not had much in the way of problems with joint paint...just the brutal nerve pain from the sfn as well as the autonomic involvement.

The only other thing that I can really think of is that there are something about the capillary beds under some of my fingernails that the rheumy says is sometimes seen with patients with autoimmune disorders, but it is apparently very non-specific in what it means.

That's where I stand. I could either try the 40 mg 2 wk, 20 mg 6 wk prednisone trial (although my inflammatory markers have always been low) or push harder for the IVIG pursuit at next appointments with neuro/rheumy I guess.

It's tiresome, because I feel like the doctors could figure out more than they do sometimes. But easy for me to say I guess.

This is one of the best fingernail explanations and connections to disorders on the net. Nice photos too:

http://www.medscape.com/viewarticle/712251_2

If you are not a member of medscape you can join easily for free.
Many very good topics are covered on Medscape so it is a very useful informational tool.

Excellent link!!

That's where I stand. I could either try the 40 mg 2 wk, 20 mg 6 wk prednisone trial (although my inflammatory markers have always been low) or push harder for the IVIG pursuit at next appointments with neuro/rheumy I guess.


Hi David,

I have rampant inflammation in my body as a result of another autoimmune as well as the SFN. I have severe inflammation in both eyes causing uveitus as well. My blood markers always come back within the realms of normal despite all that is happening within my body. I'd give the steroids a try.

The bloods so often do not give any indication of inflammation.

Hi, Joanna, and thanks.

I may give the prednisone a try even though I'm skeptical. I also noticed that my dry mouth and eyes have been a little worse than normal lately and about a month ago I had my daily plaquenil reduced from 400 mg to 200 mg. It may very well be coincidence because goodness this stuff has fluctuated so much in intensity over the years.

Strangely, it can go from being seemingly almost nonexistent for a few days or if I'm very lucky weeks to severe burning out of nowhere and the dryness.

I don't have autoimmune conditions but I do have Immune Disorder conditions.

What this means that my Immune System doesn't use autoantibodies to attack and damage my organs/systems. It uses other biochemicals (possibly cytokines).

The net result is exactly like autoimmune disorders: My moisture glands are severely damaged (like Sjogren's) my lungs, my bladder, my hearing, my peripheral nerves and my small fiber nerves are all damaged, some profoundly.

I actuallly have Immune Deficiency Disorder, as well, which means that my immune system does not produce enough of the antibodies that protect me, but DOES ATTACK my organs and systems.

This is beyond science fiction, isn't it?

I have infusions of the main antibody that I am deficient in (IgG) through monthly IVIG.

It is truly a weird world for me.

Hugs, ElaineD

What test did they use to determine this (the cytokines, not the immune def.)?

Dear en bloc:

An immune deficiency is just the lack of adequate antibodies (in my case IgG and IgM)

The lack of adequate antibodies only means (in my case, but not for everyone with deficiency) that I don't have adequate defense against infections.

The attack on my organs/systems is another activity of my immune system, not the deficiency, but some product of my immune system which attacks my body.

For many people with Immune Deficiency, the attack on their organs/systems comes from the action of autoantibodies. About 25% of people with my category of Immune Deficiency (CVID) also have autoimmune conditions which are the result of the action of autoantibodies produced by their Immune System.

I do NOT have any autoantibodies, and yet I have a myriad of conditions as a result of attacks on my organs/systems.

My Duke research Immunologist (and my husband, who is also a research Immunologist) 'theorize' that it may be that my Immune System send cytokines to damage my organs/systems.

There is no test for this. As my Immunologist says 'We use the tests we have, not the tests we need".

Here are some links:

Cytokine - Wikipedia, the free encyclopedia

Cytokines are produced by a broad range of cells, including immune cells like macrophages, B lymphocytes, T lymphocytes and mast cells, as well as endothelial cells, fibroblasts, and various stromal cells; a given cytokine may be produced by more than one type of cell.[1][2][3]

They act through receptors, and are especially important in the immune system; cytokines modulate the balance between humoral and cell-based immune responses, and they regulate the maturation, growth, and responsiveness of particular cell populations. Some cytokines enhance or inhibit the action of other cytokines in complex ways.[3]

They are different from hormones, which are also important cell signaling molecules, in that hormones circulate in less variable concentrations and hormones tend to be made by specific kinds of cells.

They are important in health and disease, specifically in host responses to infection, immune responses, inflammation, trauma, sepsis, cancer, and reproduction.

Cytokines, Inflammation and Pain

The above link describes the actions of cytokines in pain and inflammation.

I understand all this and have immune deficiency (CVID) myself.

I was wondering if there was an actual test you had done for the Cytokines. Apparently not, so this is basically speculation/theory on the part of the immunologist. I do think there is Cytokines labs...but they may only by via lumbar puncture it this point (according to others on this board). I was hoping you had some info on NEW testing available.

ElaineD, you could discuss the option of having your serum levels of TNF tested with your immunologist.

TNF is an inflammatory cytokine, mainly made by activated macrophages, which are recruited to sites of tissue inflammation.

TNF is associated with the tissue damage in a number of diseases with an inflammatory component (rheumatoid arthritis, ankylosing spondylitis and inflammatory bowel disease among others.

If your TNF levels are abnormally high, this can be treated with humanised monoclonal antibodies specific for it (infliximab is an example) or with what is in effect a soluble form of a TNF receptor (etanercept).

Depending on the results of the tests, your immunologist should be able to discuss these treatment options with you.