Sjogrens with out a dry mouth???

[Kimi]

I get the dry mouth a lot but there are times when I have plenty of spit. I would not have thought if having SJS if not for the mouth biosphy I had. Can it be that things have not progressed that far yet?

Just wondering. I see the rheumy this week on Thursday and have so many questions!!! Please let me know of any questions that you think should always be asked for a first DX appointment?

Thanks! Kimi

[skygirl]

HI, I'm on the same boat...

but in my case I need to ask the doc if I have other underlying immune diseases, like lupus, arthritis or other...I really want to know all that  could be wrong with me..
I  have an app tomorrow, and Im seriously going to ask for more blood work ....
I wonder when they start giving you any meds if any....Or they only start any meds only depending on the symptons...etc..

but I will wait and  see what other people will say!

[Linda196]

The questions I always think of are:

-do you treat symptoms, or do you treat lab results?

-do you include fatigue, muscle and joint pain and neurological and gastrointestinal symptoms in the realm of possibility with SjS, or would you feel those have other causes?

-do you work with a specific team of other specialities including an opthomalogist, who are experienced with SjS?

-do you have a number of possible treatments in mind for me, depending on how I respond, or do you prescribe a specific regime?

Good luck with your appointment and good for you, being so prepared. Please let us know how it goes.

[HL in NY]

Kimi:

I'm in the same boat. My mouth would probably qualify on the dry end of 'normal' and that's after having a Parotidectomy and radiation therapy! My eyes are a little dry, but not bad.

However, my bloodwork is crystal clear.

What I've read in Pubmed documents is that our type of Sjs is called "extra-glandular". Meaning it's hitting areas of our bodies other than our glands. For me, it means some nasty joint pain and fatigue. It doesn't necessarily mean the condition hasn't progressed.

Good luck with your Rheumy appointment! I see mine on Wednesday.

Heather

[eyeamdry]

My eye symptoms began almost 10 years ago after Lasik surgery.  I traipsed all over the country looking for a fix to my post-Lasik bad eyes.  I was dx only two years ago.  Somewhere in-between, my lips began to have numbness and also my knees!  My mouth dryness didn't become evident until after my diagnosis and then it hit really quickly and hard.  Lucy

[KYMOM]

Kimi,  Symptoms abound with Sjogren's.  I have learned through this site that you treat the symptoms not Sjogren's.  My eyes are getting dryer.  My mouth has spit but feels dry most of the time and my lips always feel dry.  Roxanne

[JannaLee]

Kimi,

I hope you have not/will not progress very far!

My mouth and eyes are not very dry at all.  But the rest of me is sickly from Sjogren's. 

Apparently there are zillions of people who go along without much trouble from this disease.

How does the rest of you feel?

Janna

[Kimi]

I guess I keep wanting to think the lip biosphy was wrong and that I do not have SJS but..... don't think that is going to happen. All the other symptoms I have are so SJS. I have the dry eyes, dry feeling mouth but still have spit, aches and pains, join pains, submandunilar (sp?) gland is enlarged, no energy, brain fog, nurothorphy (sp?) in the feet and numbness in the hands..... so on and so forth.

I always blamed things on the thyroid cancer as well as fibro but now I can see there was something else going on. Just needed to put two and two together. To be honest, it kinda scares me knowing that I have the SJS. It can do real damage to the body  were the fibro just sucks to have but does not damage the body, just the life. SJS can do both.

I am finding out this week too if I have to have more surgery for the thyroid cancer. They are thinking of removing several enlarged lymph nodes in my neck. Not fun. I am hoping they will say I can wait and just keep watching things but I think they will want them out. So with finding out about eh SJS I really fear surgery more.

I am looking forward to meeting the rheumy this week. I have heard good things about her and she must be good in SJS as two Dr's recommended her and she has spoken at several SJS conferences. Plus Irish here on the list recommended her as well.  it helps to know the Dr you are going to see really understands SJS.

Well guess I have rambled on enough here, just feel kinda whiny today. Aches so bad, not sleeping well and of course that makes ya ache more. Plus it is garden season and I have been out side so much and over doing. Not smart but things have to get done. Garden is not going to plant itself for me. LOL. Boy, I am whiny today! UGH, not like me! But I am learning that some times we need to whine and let it all out. Sometimes it is OK to say this all just SUCKS!  It's not fair and I want out!!! No more illnesses! I wanna cry but crying makes me hurt worse after plus who gets tears to cry with anyways??? But this reality for me now and I will adjust. Just takes a little bit of time and also getting the rheumy appointment done so that we can get a game plan going. Then I can start to get moving forward again.

[JannaLee]

Poor little achy sweetie,

Sometimes it's good to let down and do a little whining...in fact you could do with a little more of it, me thinks!

I was completely surprised by my diagnosis a year ago.  With no idea what an autoimmune disease was!

For several months I expected(prayed) to learn it was a huge mistake...even though I felt rotten just like you.

I'm sorry for it and for the frightening cancer cloud hanging so heavily about your shoulders!

Love to you,
Janna

[Dolly Dimples]

  Kimi, just remember that SS can , but may NOT cause other body problems.. I have had the same issues with SS for many years now, but  it's not progressed to anything too serious..
  My dryness and feeling the cold (even when others are warm) has been my main issues,. yet at times like you I am not so dry, that's because it's other things that make it worse, such as atmospherics, eating certain foods or even drinks  (especially alcohol)  etc'  etc'    can all cause more or less dryness...
     My other problems are ribcage swelling and upper centre back pain , which waxes and wanes!   Sunshine doesen't like me either.. I could go on my dear but I'm 72 and still coping, albeit I still have a wee cry ,but I'm alive!    Dolly
                 

     

[Kimi]

Thanks for the kindness! You guys are great! Just been a bad couple of weeks here. My dearest childhood friend's mom died, truly this is a blessing as she had been so sick for so long, but it hit me kinda hard. I helped with the wake and funeral and have been visiting with her dad off and on since.  Think it hit me harder too cuz my dad has terminal lung cancer. Then dealing with my own health on top of all that has taken a bit of an emotional toll on me. But i know this too shall pass. I just need to wait upon the Lord to send the sunshine, he always does.

I know I have had a lot on my plate lately and also have not been taking as good of care of my health as I should too. Been trying to do too much and not sleeping well either. Plus it seems there is always like 2 to 3 weeks every spring and fall that I feel horrid, the fibro flares with vengeance. I have come to think of them as my spring and fall change. Don't know if others have had this or not. I think it might be a Minnesotan thing or at least those of us who gets cold and snow in winter. I read once that our blood gets thicker in the fall and thins out in the spring. Guess it has something to do with the tolerance of the cold. So I figured this is what happens each spring and fall. Me thinks too we have not had enough sunny days here in MN, winter does not want to give up its hold.

I know we all need to whine once in a while, and maybe more than just once in a while too. I think you are right JannaLee, I tend to hold things in way too much then they burst forth like a flood when I do let them out. Typical woman as my hubby would say, LOL. He thinks I hold things in too much too.

I did get to go out and start uncovering my plants this morning for a bit and the fresh air did me good. Felt better right away. I am making sure I do not do too much at once though. I am doing a little then resting and repeating the process. I am very thankful that so far the sun does not bother me. I love being  out in my gardens!!!

Well enough rambling for now, I need to go and take a short snooze while the grandson is napping.

Lovingly, Kimi

[JannaLee]

Kimi,

I'm so glad Irish was able to help.  She is someone I would trust with my life!

Me thinks you are right about the weather!  It's drippy grey days in the great state of MN.  The lake is FINALLY starting to thaw, we have about a 20 foot fringe of water along shore,  and I read in the local paper a couple lakes just south of me are nearly thawed (Pokegama Lake near Grand Rapids).

I think you are on to something with your "seasonal pain theory"...my pain is so bad the last several weeks!  And when I think back, I realize my toes (a particularly painful area) haven't hurt like this since last Fall!  But I think my Spring pain is worse than the Fall pain.

Looking at your profile I notice we joined this forum at the same time of year almost to the day.  I was hurting so much at this same time last year!

Janna

[Kimi]

Janna!! Your an MN girl too??? I live in Anoka, way south of you from what I gather. We usually get up to Grand Rapids once a year though. I love the yarn shop over the Julie Garland museum. Love that shop, miss Z though who use to own the shop. She passed a about a year ago from cancer. She was a great gal. She is the one who taught me how to spin yarn.

Kimi

[Pisces24]

Wow! I am very surprised with all the different symptoms associated with Sjogrens. Everyone is sure a lot different. My cousin told me autoimmune diseases are "tailored to each person", everyone is specialized. I am surprised that the dr's don't understand about the progression more though.

For me, some odd blood#s got the ball rolling.  I wear short sleeves in the winter where everyone around me is wearing sweaters. I only notice the cold in 2 fingers in the winter (reynards). I get sinus infections and tonsillitis easily especially when it it warm, wet and cool weather and they are durn hard to get rid of.  So far "knock wood" I have not had a really bad (drug behind a truck on a gravel road feeling) sinus infection this year. Yay!  I've had a lot of cavaties since about time this "stuff" started -right now that is the biggest problem! I've been tired at times but not bad - I attribute it too not exercising like I usually do.   I was sure I had dry mouth - but nope - dry eyes.  So how SJS is different in everyone is really really weird 

I will have to have eye surgery in about 5-10 yrs for slow growing cataracts by the way.

I'm in Iowa but have a ton of cousins around Minneapolis, Stillwater, Bloomington, etc. etc.  Due to them I can't complain about the weather in Iowa because it is always colder there. 

[JannaLee]

Kimi!

My mother comes all the way from Texas for that yarn shop too!!

Let me know when you might come up and I'll meet you in town for lunch or have you out to the lake for a meal?  We are about 20 minutes drive North of Grand Rapids.

I cannot tell you how good it feels to know you and maybe someday get a real hug!  I've also secretly dreamed of hugging Irish someday.

Janna

Pisces,

I completely agree about how so many Rheumatologists don't have a clue about variety and progression of symptoms!  It is amazing!