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.
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
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.
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.
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.
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?
I HAVE BEEN TESTED FOR EVRYTHING AND IT ALL COMES OUT NEGATIVE. THAT IS WHY I AM SO CONFUSED.
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.
CALIFORNIA, CITY OF EL CENTRO
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.
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!
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.
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.
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.
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.
Read the post called " only one without pain" by Babs659
thank you, i don't see alot of people with swollen parotid glands on here does that just subside once you have had it a while.
Welcome Ryno
Re your query,
No not all of us suffer with pain, I don't have much pain myself , but if I go mad with jobs then sometimes i get upper back pain and under ribcage swellling. but SS is associated more with arthritis and rhuematic pains, and of course a whole lot more issues..
Please read the posts here, there are all kinds of problem people here.. You will learn more here and probably come to a much conclusive answer to your own symptoms.. I too have the gritty eyes, dry mouth nose, skin, nails and even genital areas, I'm sometimes a little sore at glands under chin bone..
Also suffer regularly with sweats and chills,
One does get depressed, but one learns to carry on and even enjoy life.. Keep looking for a good doctor, and as Erin suggests see an Ophthalmologist, it's a good place to start.. Good Luck Dolly
thank you, it sounds like i am lucky to only have what i have which is the taste, swelling,and my eyes
Ryno,
I don't have much pain. I occasionally have pain in my hips and knees but it has gotten better since I was diagnosed and started a number of new drugs (I think from the Plaquenil). I have had swollen parotid glands in the past, but not recently. The swelling usually went away after several days. I've read in other posts that sucking on sour candies helps because it stimulates saliva flow. I chew sugar-free gum a lot to help keep my mouth from getting over-dry, and I use Biotene toothpaste for dry mouth too. I didn't lose my sense of taste, but I did notice a change in how things taste as my mouth got drier. I was much more sensitive to spicy foods.
Many people in here have other diseases in addition to Sjogren's (neuropathy, rheumatoid arthritis, lupus, etc.), and pain is associated with those diseases as well.
well my swelling has been going on like for 6 weeks, i have had a cellular biopsy and nothing, but my taste sounds like yours. well i guess i am just going to go get a specific blood test done for sjogrens. i just got back from my optomotrist and he said that my eyes do not appear to be like that of a person with sjogrens.
Hi ryno, I would suggest an Ophthalmologist, not an Optometrist in getting answers for your dry eye. I have an Optometrist as well as an Ophthalmologist and my optometrist admits to not knowing much about Sjogren's. Is there any way you can see one without a referral? If not, you may need to get with your doc on getting a referral.
I was diagnosed by my ENT (Ear, Nose, Throat) doctor. That is who I go to when my parotid glands are swollen. He has told me to come in as soon as possible when they start swelling. He gives me medicine so I can stop infection. Have you tried another doctor when your glands are swollen? Good luck and keep posting! Hugs, Redetha
yes i have been to 2 different eye nose and throat doctors they say i have no infection based off my biopsy, and as far as my optomotrist, he has alot of patients that have sjogrens and he said my eyes looked fine so i guess i will have to keep searching, i sure do thank all of you for your answers, what medication can i take for swollen parotids.
Hi ryno,
Let me also welcome you to the SJS World! Please peruse the board as there are tons of topics and oodles of information that you might find interesting.
El Centro, eh? I've been there a time or two! Nice town. :D
You mention that you've seen an optometrist, but have you seen an ophthalmologist? The optometrist I used to see noticed that my eyes might be dry, but was decent enough to send me to an ophthalmologist, and he diagnosed my dry eyes. These are a couple of dry eye sites that I read, and they have some good info.
http://www.allaboutvision.com/conditions/dryeye.htm
http://www.dryeyezone.com/
I also have a lot of pain, but I also have fibro among other things, so there's no telling were that comes from, but it's not to bad these days.
I can't speak of swollen parotids, as I've not have that particular symptom, and I feel for you, that's got to be painful. Hang in there as I hope a more knowledge able member will stop by and give you some good info soon.
Take care -
Patze