Sjogrens?

[Prefect]

Male, 47

I fell ill in 1997 with what appeared to be "jaundiceless" case of hepatitis. SGOT (AST) around 1200 and SGPT (ALT) around 800. Tested negative for all hepatitis pathogens. Enzymes  went back down within a few months.

Most of my symptoms have remained to this day. For years I thought I had Chronic Fatigue Syndrome but I've realized I have good levels of daytime body energy and amazing exercise tolerance, so I doubt it now. Lately I've found out about Sjogren's and wanted to ask the opinions of sufferers here, because when it comes to these types of conditions, the patient reluctantly become more knowledgeable than the medical community.

My symptoms: Dizziness, ringing in ears, morning mental fog, constant nasal stuffiness (can't breath through them at night, but hardly any mucus), panic attacks, derealization, trouble concentrating, weird visual disturbances (slight blurring in left eye which eye doctor sees no reason for, and very subtle sense of occasional double vision), red blood shot eyes in the morning that feel heavy, diarrhea/floating pale stool, gradual grinding in joints (feels like loss of cartilage), non-acidic reflux. My mental fog comes on exactly when my eyes suddenly get gritty and itchy at sporadic times of day.

I don't have a dry mouth.

The reason I'm here is lately I've read you can get autoimmune hepatitis in Sjogren's and I've looked up photos of Sjogren's eyes and they look strikingly like mine, but that may not say much. You can have red eyes just from anxiety, which can also cause a lot of my symptoms. My doctor is currently having these tests done: ANA, Rh factor, ESR, CRP.

Any input on likeliness of Sjogrens?

Thanks.   

[SunshineDaydream]

Welcome to the board, Prefect. Sorry to hear you are suffering. I have no input regarding the likelihood of you having Sjogren's. However, I noticed that your doctor did not include tests for anti-Ro/SSA and anti-La/SSB antibodies. They are not present in all Sjogren's patients but are worth checking.

[irish]

I would pursue checking for pancreatic enzyme deficiency along with liver autoimmune issues. Also, might want to check on Celiac Disease also. You appear to be suffering from malabsorption of some type. When stools are light in color it is significant for some of the above issues. Also, the floating stools are indicative of high fat content in stools which goes with the malabsorption issues. When you have malabsorption of food you lose your nutrients which can affect everything in your body.

It is entirely possible that you have sjogrens, but with all these other issues, especially the stools color and floating issues, it would be wise to get these sorted out first. The stools and liver, pancreas need to be sorted out in relation to all this. Sort of one thing at a time and process of elimination.

You would be wise to get a 2nd opinion if this doctor doesn't find the cause soon. You are suffering too much and need some idea of what is going on so it can be treated. Good luck. Irish

[Prefect]

I noticed that your doctor did not include tests for anti-Ro/SSA and anti-La/SSB antibodies.

I asked for them, she wants to do this "systematicaly". If ANA is off, she'll refer me to a rheumatologist who'll do the other tests. I live in Canada, doctors here are government workers and somewhat bureaucratic in their approach.

might want to check on Celiac Disease also. You appear to be suffering from malabsorption of some type.

Portions of Celiac tests are back and seem fine. I'll need to hire a naturopath to do a comprehensive stool analysis specialized test for malabsorption (about to) as doctors up here won't look into that unless you show signs of malnutrition, which I don't (My doctor told me today my blood work shows very good health in all aspects - she checked me for magnesium and B12 as well)

[irish]

My hubby was celiac and youngest son is celiac with seronegative blood work. He got so ill that he finally started the diet and improved dramatically in a month. His little boy is also celiac so I have been around Celiacs and cooking for them for 40 years.

You can still have celiac even with negative blood work. The other thing is the possibility of the autoimmune liver disease because of the floating stools and color of stools. The is why I mention getting a second opinion and probably with a specialist of a different class. Find a doctor in a different specialty and maybe you will get a fresh outlook on these problems. Just a thought.  Good luck Irish