I THINK I HAVE SJORGRENS PLEASE HELP

[ryno104]

SYMPTOM'S
SWOLLEN PAROTID'S
NO TASTE AT ALL
GRITTY FEELING IN EYES.
KNEES AND ANKLES HURT BUT NOT ALL THE TIME.

IT ALL STARTED ABOUT 4 MOS AGO.  EVERY DAY I WOULD GET A FEVER ABOUT 3 TIMES A DAY, ALONG WITH EXTREME FATIGUE AND MY WHOLE BODY ACHED.  I WENT TO ABOUT 6 DIFFERENT DOCTORS AND THEY ALL SAID THERE IS NOTHING WRONG WITH YOU.  SO AFTER ABOUT 2 MOS. IT ALL WENT AWAY EXCEPT ABOUT 2 WEEKS BEFORE I STARTED FEELING BETTER MY PAROTIDS STARTED SWELLING ALONG WITH MY EYE SYMPTOMS AND THE TASTE ISSUE.  HAS ANYONE HAD A SIMILAR EXPERIENCE AND DOES IT SOUND LIKE SJORGRENS,  CAUSE THE DOCTORS DON'T SEEM TO KNOW.

[jonnell]

Sounds like it very well could be, my 4 year old daughter has sjs and she has the swollen paratoids,  she started with a lot of your same symptoms.  We had her ana level tested came back positive and high so they referred us to pediatric Rhumy in the next state who did more blood work and she was positive for ssa and ssb antibodies and also was positive for having had the epstein barr virus which I believe started this whole mess.  She ran a lot of low grade fevers, low back and leg pain, headaches, MRSA infections 6 times(last time at 18 months had to be hospitalized for 5 days for iv antibiotics.  She also has the maylar rash when in the sun.  The heat bothers her very badly.  She also has joint hypermobility syndrome, and Reactive airway disease.  She has a constant cough made worse by playing and cold air.  The first step I would take is to get your doctor to do a ana level and go from there Good Luck and Welcome to sjogrens world there are many wonderful people here.   Hugs and Kissess  Jonnell and Jenna

[ryno104]

SEE THIS IS THE FUNNY THINK MY ANA LEVELS ARE PERFECT,  AH THIS WHOLE THING IS DRIVING ME CRAZY.  THE DOCTORS SAY I AM PERFECTLY FINE,  BUT I CAN'T TASTE, SWOLLEN PAROTIDS, AND EYES THAT FEEL LIKE SANDPAPER.  HAVE YOU HEARD OF ANY OTHER DISEASE THAT IS CLOSE TO SJORGRENS SYMPTOMS,  BECAUSE OTHER THAN THESE SYMPTOMS I FEEL GREAT.

[jonnell]

It is possible to have sjs and not have the positive blood work, there are many people on here  who dont have the official dignosis but are being treated by there doctors as if they do.  Im not sure about other diseases but it certainly sounds like sjs to me, but more knowlegeable people will be along to give you some advice about other diseases.   Everything about sjs is confusing I would make a appointment to see a Rhumy and see what they think.  Jenna looks like a little chipmunk when her paratoids are swollen.  Do you have facebook,  you can look me up if you do, would like to be your friend,  Jonnell Labas is my name. 

[ryno104]

WHO IS RHUMY AND NO I DON'T HAVE FACEBOOK,  IT CAUSES TO MANY PROBLEMS. MY WIFE HAS IT HER NAME IS KATELYNN JONES.  I DON'T KNOW IF YOU CAN LOOK IT UP BY NAME.

[jonnell]

Im sorry a Rhumy is short for a Rhumatologist,  it gets used a lot around here.  Ill see if I can find your wife.  Have you been tested for mono?

[ryno104]

I HAVE BEEN TESTED FOR EVRYTHING AND IT ALL COMES OUT NEGATIVE.  THAT IS WHY I AM SO CONFUSED.

[jonnell]

I would make a appointment to see a Rhumatoligist and their are 215 Katelyn Jones on facebook lol.  What state do you live in?  Like I said you can have a autoimmune disease without the positive blood work.

[ryno104]

CALIFORNIA,  CITY OF EL CENTRO

[jonnell]

I couldnt find her but she is welcome to look for me I live in Millville NJ, I also have a Sjogrens syndrome site on my facebook.  Hang in there their are more people that will answer your post with some advice and ideas and best of all support.

[Wynter]

Hello,

Some people that don't have positive bloodwork are diagnosed with a lip biopsy. Being the you have swollen parotids, you should consider having the lip biopsy done. I don't have positive bloodwork nor did my lip biopsy come back positive. The docs say I don't have Sjogren's, but I have all the symptoms. Even if you don't have a diagnosis, you can still get treated for the dry mouth/eyes and whatever other problems you are having. Good luck!

[ErinG]

If you haven't been to one yet I would suggest seeing an ophthalmologist.  An ophtho can properly evaluate your dry eye and determine if you need more aggressive treatment than just tear drops.  That was my first step in getting diagnosed.

[lighthouse33]

The kindest thing my rheumatlogist siad to me when I first went to see her was "I know that something is wrong wtih you but it isn't showing up yet."  Of course I was refered to her by my GP with a positive RF factor and undetermined ankle pain.  Eight months later after blood tests every three months I finally tested positive for the Sjogren's Antiboodies, SSA and SSB.  The diagnosi was confirmed by a lip biopsy.  It was only then that it was written down as such, she didn't want to have the wrong diagnois for the insurance company to go crazy over.  I feel very fortunate to have her.

Now eleven months into treatment things are better.  Some days are bad some are good.  The worst part is the neuropathy pain but I have managed to start up a walking program.

Yes, definetly make sure you get treatment for dry eyes if you have it.  This can scar the corneas and we wouldn't want that to happen.

[ryno104]

what i am seeing on here is alot of pain with alot of people,  does sjorgrens always have pain associated with it?  cause i don't have any pains.

[jonnell]

Not always you can have sicca syndrome with the dry eyes and dry mouth that is the first dignosis my 4 year old got before her blood work came back positive for ssa and ssb antibodies.