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wendya432
06-30-2012, 07:27 PM
The dry eyes you get with sjogren's, how does it feel? Is it like you have to constantly open your eyes big and roll them a bit and then blink. Does that even make sense?! lol If that's it, then it would explain soooooooo much!!! I'd never even heard of sjogren's before and stumbled upon it researching Lupus.
Does this sound like sjogren's?
-dry gritty eyes that I have to blink hard all the time
-sometimes eyes water and skin around my eyes feels burned almost
-dry sinuses that can be so dry they are painful
-any cold immediately because sinnusitis
-kidney problems (spilling protein, many stones)
-low potassium
-tongue always feels dry and swollen, cracks sometimes
-geographic tongue that gets very painful (not sure if this is a symptom, but throwing it out there)
-huge dental problems. decay like crazy, even under dental work
and all the typical AI symptoms, joint pain, fatigue, etc, etc.

-Wendy

magistramarla
06-30-2012, 09:41 PM
Hi Wendy,
Welcome to WHL! I don't know whether you've found this site yet or not, but this is a good site to answer your SJS questions: http://www.sjogrens.org/
I'm not a medical professional, but I can say that I have many of those symptoms and I've had a few positive tests for SJS.
The dental problems, dry tongue, sinuses and eyes really sound like it.
Have you had blood work done beyond just the ANA? SJS is indicated by high SSAs and/or SSBs. Your ophthalmologist can also perform some tests, including the Schirmer's test, to determine dry eye syndrome. I've also had a positive lip biopsy. If you have one of these, I recommend that you get it done at a teaching hospital where the docs and the lab techs are familiar with the procedure.
Autoimmune issues tend to run in packs. I have an overlap of SJS with Lupus, RA and Psoriatic Arthritis.
Find a good rheumy who will recognize if you have overlapping diseases and treat you accordingly.
Hugs,
Marla

wendya432
07-01-2012, 06:17 AM
I haven't had any SS tests done that I know of. I've had the ANA and DS-DNA (waiting on results from that one). I think I'm going to have to beg my Dr. for a referral to a rheumy. Right now she is also doing tests to rule out any thyroid problems or anything like multiple myeloma. I'll have to find a new opthalmologist, as well. Mine retired quite a while ago and I haven't even been to any eye dr in quite a while.
Thanks you so much. Reading on here is like lifting a veil. It just explains so much I've been dealing with for so long!

-Wendy

magistramarla
07-02-2012, 02:34 PM
Hi Wendy,
I'm glad that WHL is helping you. My internet system knocked me offline just as I was answering you, so I wasn't sure if it posted or not.
It's working now, so I'm happy.
It's good that your doc is covering all of the bases. If you can, find a good ophthalmologist who advertises that he/she specializes in dry eyes. I found one, and he knows more about SJS than my rheumy. Also, most of us are taking Plaquenil - it's the starter drug for most AI diseases. It can very rarely cause eye problems, so it's very important that we get regular check-ups by a qualified ophthalmologist. If you can get one lined up now, you're ahead of the game.
Hugs,
Marla