The original post is almost a year old, but for anyone still interested in other ideas.....

If you have not been screened for gluten sensitivity, you should be!! Your medical problems scream potential for gluten sensitivity. The tests you need to request are antigliadin IgA, IgG. Just be sure they do not substitute a newer similar test, called anti-deamidated gliadin.

Gluten sensitivity is common in many autoimmune diseases... and may be the underlying problem for some with Sjogren's and/or fibromyalgia.
http://jccglutenfree.googlepages.com...oimmunedisease
http://jccglutenfree.googlepages.com...atiguesyndrome

In fact, one person who used to post as debinaz at BrainTalk years ago completely reversed her Sjorgren's disease by removing gluten, casein and soy from her diet... ANA antibodies back to zero, symptoms gone. Her doctor was impressed, and now screens all of his Sjogren's patients for gluten sensitivity and recommends a gluten free diet for those who are postive.

Gluten sensitivity is also associated with several skin disorders, one of which is a blistering rash called dermatitis herpetiformis. Has your dermatologist done a skin biopsy of the surrounding tissue to rule this out?






With all of these risk factors, it is definitely something worth considering. There is more information on diagnostics and other information in The Gluten File. You can scan the right bar from the homepage for topics of interest.
http://jccglutenfree.googlepages.com/home

You mentioned many other symptoms that are common in celiac disease/ gluten sensitivity... and please be sure that your B12 level is upper range. A lot of symptoms you mention are symptoms I had with a B12 deficiency.
http://jccglutenfree.googlepages.com...ciencysymptoms

Doctors often miss this, think low normal B12 levels are ok, etc. B12 deficiency is common, especially in those with autoimmune disease. This can all go together... and frequently does.

Tests for B12 deficiency:
B12 level
homocysteine
methylmalonic acid

If you take standard psych testing when you are physically ill, it will show somatoform disorder. Psych testing works on well people to some extent. I imagine some pain clinic or IME got you into the psych testing realm. When you answer the questions about symptoms, 'My neck hurts', etc. positively, it will skew your test to 'being somatoform'.

Now, since you have Sjogrens.....it DOES come with neuropathy and potential encephalopathy. Like Lupus, it can produce psychiatric problems via inflammation or vasculitis.

And they won't find that on MMPI (type of psych test)

I am going to bring this thread back to the foreground again. I have been in another forum for Sjogren's and I want to make things clear.

There is Sicca and Sjogren's.

Many, many drugs cause sicca. Dry mouth, dry eyes.

Among them are antidepressants, all of them. Benzodiazepines (during withdrawal too) , z drugs, antiparkinsonian drugs, diuretics, opiates.

If you are on these drugs, have negative blood work such as a normal ANA, normal ENA, and a lip biopsy is negative...look at the drugs. They should look at drugs FIRST before they do tests. It is easier to go off these drugs and see if things improve, than to go thru all that testing and have it come back negative.

Not all sicca is Sjogren's. Not all Sicca is inflammatory. Not all fatigue is autoimmune.

Many diseases come with sicca because sicca can be neurological as well as inflammatory.

When people seek to label their sicca as Sjogren's they do themselves a disfavor. They may not find out what the cause of the sicca is. I would hate to mistake SjS for amyloidosis!

I know what it is like to be anxious for a diagnosis, but, to be accurate, is what is most important.

Sicca is NOT Sjogren's. Primary SjS is worse than secondary SjS and the term secondary SjS should be dropped unless the blood work is +, because, all autoimmune disease can produce Sicca. Sicca is part of RA, Lupus etc. People with autoimmune disease already have the aching, the fatigue etc that come with any AI disease.

Primary SjS can make people very, very sick. Sicca is uncomfortable but not life threatening. Primary SjS can be.

Rheumatology needs to decide what is what....they have tried to classify autoimmune disease by the ENA, when it should simply be the ANA being +. They need to realize that many of the ENA do not define the disease. Only a certain percentage of people have the 'correct' antibody for their disease. However, at least elevated ANA, low complements, high sed rates, high CRP, thrombocytosis indicates inflammation. Without these markers, it is hard to assign sicca to an inflammatory cause.

Lip biopsies can show inflammation but it is not always SjS.

SjS diagnosis is a mess.

When I was discharged from teh hospital on Dec 30/09,, the Neuros that were attending to me said in there rellease narative,, that I had in the past been treated with ECT and also lithium,, now the lithium was dsomething that was treid back in 1986 when I had a severe anxiety problem,, but teh ECT,, I only agreed with that when I was admitted to the hospital back in 07 for severe numbness and burning throughout the body,, when EMG studies were conducted,, blood test run,, and everything came back normal,, I was approached in my room by the hospital shrink,, and was told that since nothing couold be found,, that iwas definately a somotaform disorder,, they asked me to stay in the psych ward,, at that time I said to my wife,, if theres a chance that I might be getting more medical trwatment,, then i will do it,, big mistake,, they tried to med me to zombie level,, then about the 4th day there,, they approached me about ECT,, me being naieve thought maybe in my head there is something worng,, so like a fool I had it done,, 5 times,, the last time after my release,, it was horrible,, left me feeling numb and lost to the world,, I try to forget about that,, but the problems continued,,
I went downhill from teh neuropathy,, I was getting sicker and sicker,, til we finnaly met a good neuro,, and a good rheummy,, who did the right testing and found the Sjogrens,, and also the SFN,,
NEVER go to a small town hospital that NEVER sees autoimmubne disease,, these people are absoulately worthless,, they might be good for stopping nose bleeds,, and treating below level 1 problems,, but drive yourself to the bigger cities to get the help you need,, you will get jerked around by GP;s,, you will get jerked around by local Neuros who deal with stroke victims,, but have little to no experience in AI Neuro problems,, or Neuro problems in general,, just remember one hting,, all doctors are called doctors,, regardless if they graduated at the top of there class or at the bottm,, choose wisely folks,, do not assume that since the guy or woman is wearing a white coat they kow anything

Even big cities can do this tho smaller can sure be a problem. I was diagnosed with Sjogrens in 06 and in late 08 I went to Mayo clinic for testing for myasthenia gravis and the neuro sent me a RHeumy consult. It was at 5pm. I was totally brain fried and was on mestinon which makes the Sjogrens WAY better. I didnt tell her half of what I was struggling with with the Sjogrens. They did knew blood tests and asked to see my biopsy slide from the university back home. They said no you dont have it mostly based on me not telling them all the miserable stuff and their blood test. So now the university who diagnosed me except for my pulmo doesnt include it anymore in my diagnosis! Sometimes no matter where you are being treated you have to get away from the old records. I saw a hemotologist who I had to tell I was on Paxil near 10 years ago and wow did her overreact to that. He without my permission called the shrink that prescibed it and it all ended up a giant mess. He had made his mind up just from how debilited I was and the paxil that it had to be the easy choice. He was very hard to talk to as he was very foreign so alot of what I tried to tell him got lost and I feel made it seem I was a weird/difficult patient. I had a reaction to IV iron which was the first strike against me as he wanted me to get 3 treatments of that and had no understanding how I could react to it.

I know that much could be done to make medicine better but for me my worst nightmare would be to universally have all medical records available to all doctors automatically.

Annie59