Can you have Sjogren's without having a dry mouth?

[Shashi11962]

Hi, I'm new here and just posted an introduction in the Newbies section, but I have a question I thought I'd post here.

My ENT thinks I might have Sjogrens. I've had a lot of neurological symptoms and muscle spasms for three years that my doctors thought might be MS, but all of my MRIs are normal.

I started having swelling and pain below my right ear about 6 months ago, and a recent CT scan showed a 1.3 cm mass in my deep parotid gland. I was supposed to have had a biopsy of the mass, but the radiologist compared it to an MRI I'd had last April and said that it was slightly smaller, so he didn't feel the biopsy was necessary. He also didn't think that the swelling, pain, and paresthesia along my facial nerve on that side was related to the mass.

So, my ENT diagnosed me with chronic parotitis, and thinks I might have Sjogren's because I also have chronic dry eyes and the other symptoms I mentioned above. However, while I do have dry mouth a couple of times a day, it's not all the time and usually, I'm fine. (I'm having the blood test for Sjogren's this afternoon. I'll find out the results next week.)

So, my question (after all of that) is can you have Sjogren's and not have dry mouth?

[kimbo]

Hi Shash,

When I was 1st DX, I only had paratid issues fatigue and sometimes low grade fever. That was in 3/07 . Now I am having the dryness of mouth and eyes, but nothing like some here describe.

kimbo

[JJ]

Shash,

I don't know the answer for fact on that question..but I didn't have a problem with

dry eyes until recently...and if you are having trouble with dry mouth a couple of times

a day...that is more than a normal person for sure...it could be that symptom

wont be a big problem for a while and will come up at a later time...kind of like

my eyes. I have had some recent new developments that I'm not sure is even

related to SJS....but as we all refer to Pooh when it comes to new symptoms

SJS the gift that keeps on giving....good luck to you, keep us updated and keep

asking questions for sure. Welcome!

JJ

[JannaLee]

Hi Sashi,

My mouth is not very dry and neither are my eyes.  In fact I've never noted them as a source of discomfort.  I will say, that since my diagnosis, I have noticed they are not real juicy.  My dentist says my mouth looks fine to him.

I think you can have Sjogren's without these symptoms. 

Welcome to the group!
Janna

[Shashi11962]

I think I spoke too soon. My mouth has been so dry this week! I teach at a community college, and it's been difficult trying to lecture when my mouth feels like the Sahara Desert! (I keep expecting to see a little guy crawling across my tongue with a vulture after him, croaking out "Water, water!")

And now that I think about it, this does happen very frequently, and not just when I'm teaching either (so it's not just from having my mouth open for 2 hours.) It's just sometimes it's not that dry. Is that normal? To have symtpoms come and go like that?

[beckyinsc]

I think I spoke too soon. My mouth has been so dry this week! I teach at a community college, and it's been difficult trying to lecture when my mouth feels like the Sahara Desert! (I keep expecting to see a little guy crawling across my tongue with a vulture after him, croaking out "Water, water!")

And now that I think about it, this does happen very frequently, and not just when I'm teaching either (so it's not just from having my mouth open for 2 hours.) It's just sometimes it's not that dry. Is that normal? To have symtpoms come and go like that?

This is too funny, because I basically just asked the same thing this week. I didn't have the dry eyes, dry mouth and was asking about it on here. I swear, the next morning I woke up and my eyes were dry and gritty!!! I put on my post that my mother swears it's the power of suggestion...AS IF. Like Janna replied, you can't make yourself have tumors and all of the different symptoms we are all having. This is one bizarrrrrreeeee syndrome!!!

[Pooh]

Don't antagonize this beast (Sjs) it will just rear it's ugly head and say "Oh, so you don't have dry eyes or dry mouth.  Well, deal with this!" and zap you are trying to cope with it.  It loves to give out it's little "gifts" and watch as you try to return it.

This disease should be renamed Satan's Sjogren Syndrome.

There are quite a few members that were dx'd without the dry eyes and mouth, but as Kimbo mentioned, it can come later.

Pooh

[JannaLee]

Yes, it is common to have symptoms come and go.  That is another reason we are so often (incorrectly) told to seek psych help!

I didn't have dry eyes and mouth when I was diagnosed.

Janna

[MusicGuy]

Shash,
my symptoms come and go.  The feet/ankle/leg aches are most consistent.  The eyes and mouth..... I never can find a pattern.  It's a dry time right now. 

[irish]

I have had symptoms for 40 years and mostly joint and muscle pain, GERD, fatigue, etc. The dryness was very subtle in my mouth and I always thought it was from medications I took. Ended up losing all my teeth and still no one caught on. I got diagnosed in 2003 and a couple months later my eyes got dry. I went on the REstasis within 6-8 months and it has saved me from lots of eye misery. It is not uncommon to have the neurological symptoms first--that is what I did. Also lost the hearing in one ear long before diagnosis. Irish