undiagnosed and frustrated

[bluestar]

I was just wondering if anybody is in a similar situation to me.  I've had dry mouth for about 2.5 years now and it drives me nuts every day.  It seems to be my only symptom although my eyes may be slightly drier than they used to be but I only notice that in the morning when I wake up so not completely sure if they are or not.   I have seen a family doctor, a dentist, an oral pathologist and a specialst GP, none of whom can tell me exactly what is wrong or offer any form of treatment at all.  They say I 'probably' have Burning Mouth Syndrome.  Now I hope that's the case, but my understanding of BMS is that it is a burning sensation in the oral tissues.  I definately have a lack of saliva as my primary symptom, not a sensation.  My mouth feels yucky all the time but that is because lack of saliva.  I've had the blood test for Sjogrens that apparently returned negative but my oral pathologist said i have the "group" of antibodies that the sjogrens antibodies belong to, but not the exact ones that are used to diagnose sjogrens.   I'm a 36 yo male so not in the typical group of Sjogrens sufferers but I know it can strike anyone at anytime but is extremely rare outside post menopausal women.  Can anyone relate?

[DragonflyC]

Any chance that you can get a copy of that bloodwork so that we can figure out exactly which antibodies are present?  Pretty much any abnormal antibodies should be cause for concern or at least follow up.  Is your doc planning to look into them further?  Autoimmune diseases can mimic each other, so you might have SJS or something else. 

If you request the blood work and post the information here, someone here might be able to help you figure out what's going on.  I'm guessing that it might be an elevated ANA (which is a nonspecific indicator of autoimmune disease, though it can also mean nothing if only slightly elevated), but it would be good to know for sure.  I always have my doctors cc me on my lab results.  Some people don't want to be that involved, but I've found that it's necessary.

Also, I'm a woman, but I'm also in my 30s (turned 34 last month).  My SJS was diagnosed in 2008.

[Scottietottie]

Hi Bluestar 

Welcome to Sjogren's world. 

My bloodwork has never showed up as positive for Sjogren's. It showed up mildly positive for lupus but I got dxd with SjS because all my symptoms pointed that way. He now calls it a lupus/Sjogren's overlap.

People can also have Sjogren's but have negative bloodwork. When Sjogren named and recognised the syndrome, there were no blood tests around. He dxd by symptoms alone.

Take care - Scottie 

[Patze]

Hi Bluestar,

Let me also welcome  you to the SJS World!  Please do look around as there are several topics I can think of right off the bat that you might be interested in.  If you can't find it in a search of the prior topics, don't be shy as there is usually someone about that might be able to help.

I've had a dry mouth several times (where the tongue sticks to the roof of my mouth - not fun), but on a whole, it's pretty moist (thankfully).  My eyes are what is very dry these days, along with my skin, and other areas too - so not much fun.

You've mentioned that you've seen a dentist, was he an SJS specialist (or familiar with AI's) by chance?  If not, can you try to locate one in your area?  The dentist I see is not AI up-to-date, but he is willing to work with me so that's a serious plus in my book.

DragonflyC makes a very good point, can you get copies of your tests?  It's good to keep copies so you and your doctors know what has been tested for, the results, and might point toward an eventual diagnosis.  I have a ton of tests over these last several years (two binders so far), and it's helped the doctors I see keep track of what one another is doing (I have way too many 'ologists!  ).

Again, welcome and I hope to chat with you soon.

Take care -

Patze