Wellcome!
It took years for me to get diagnosed.I had over the years ,dry eyes'gastric reflux depression,sinus problems, FATIGUE!!! Chest pains. I had to sleep all afternoon & then felt like I had flu all the time
I would go to the gym & have a great work out & sleep all afternoon. I was finally sent to a rhematologist as I was having painful joints. People thought I was a diabetic as I never stopped drinking water!

I am in Australia so seeing Drs is a different process but I hope this helps!

All the best!

thanks so much, nursea49. Did your symptoms come and go or progressively get worse?

For Me, it was a long process as well...first Dr's tried to blame a lengthy divorce/stress (saying I was depressed and anxious )
After struggling with my Primary Dr. I was finally sent to an Endo.He immediately referred me to an Rhem.
a few of my symptoms are: Peripheral neuropathy, moderate-sever joint pain, Salttttttttt cravings and being so thirsty( I could drink 5 waters and 10 gatorades and still be thirsty, dry eyes, dry mouth, well dry everywhere, fatigue, cognitive compromise-foggy, insomnia, and a burnt feeling all over my skin, (sunburn feeling)
i carry moisture cream with me and it acts like advil to a headache for me. Soothes more than words!
Blood work immediately showed shogrens and ANA positive. More factors too i just forget them all.
My mother was just dx with it. not from blood work from a lip biopsy.

oopsies...spelled Sjogren's wrong.lol
Evoxac helps me with moisture in my mouth,
etodolac has helped me (NSAIDs, like advil)
Plaquenil as well.
Oh, lately I am a *huge* fan of DHA Fish oil. I really do believe my memory has increased somewhat :-)

Thank you! I just don't think I do have Sjogren's.

Do you know how you can describe your symptoms and the doc hears it his way, and yet, you just 'know' deep down that it wasn't that way.... but you're not really SURE.

I had swallowing problems in the past. My gastro guy said it was part of the IBS, since the esophagus is part of the whole system. But the neuro guy hears it and thinks Sjogren's. Ohh, I don't know. When I map it all out in my mind, I'm still going back and forth like a ping pong ball: yes, it is.. no it isn't...

But the ANA is negative. I have no actual clinical evidence of the MS, of Sjogren's, or of lupus or RA, none of the things that the sx might indicate. sigh

Sticky saliva and dry eyes, and nerve pain are all symptoms of Sjs. Many people are sero negative and have Sjs. Some also have swallowing problems and due to lack of saliva, develop GI problems.

As far as progression everyone is different. I'm in early stages (2 wee years,) and I don't have dry eye or dry mouth. My symptoms generally come in flares which means I don't have them daily. Flares can last a day or a week for me.

Hi Narey.

Some of the symptoms were there all the time such as dry mouth & eyes. My mouth is not as dry as some people so I am grateful for that! The reflux is there all the time,sinus comes & goes. My symptoms gradually got worse until I was having trouble functioning due to fatigue & feeling like I had flu all the time.

When I finally saw a rheumatologist & told him what was going on, he said "do you have this ,this etc? Isaid "yes" He then said I think I know what is wtong with you. It was such a relief!!

I had had sleep studies to see if that was the cause of my fatigue & I knew it was'nt that so to have someone on the same wavelength was fantastic.
All my tests were neg but he still said I had SS. After researching it I thought "He is right!"

Then it was a case of trial & error to find the best treatment.

Hope this helps!

If you've had the bloodwork what did it reveal? What did you doctor say about a lip biopsy- ?

We all get attacked differently and some have dry eyes but no saliva issues others just the opposite. We are all different even the way the disease progresses.

Ask about a saliva flow and lip biopsy if the doc is having trouble w/diagnosis.

Mine simply started with dry eyes- then my mouth - then my fatigue- then joint swelling- lung issues- and dental issues....skin irritations from the sun- arms feeling weird from raynauds lower legs too- forehead had numbness - and odd feelings....

Now I've learned to deal with it - for the most part. A good rheumy , dentist and eye doctors.....I manage. I had times where I couldn't walk a mile my lungs felt like someone was standing on my chest. Two days later I could walk five miles.

...got TMJ-TMD .....to boot. I'm probably missing something too. I have been diagnosed for 5- 6 yrs now....it took 10 to get diagnosed.

My digestion got messed up - I can eat pretty much anything except back to back spicy meals. Probiotics helped tremendously.

Get diagnosed - sounds just like early onset SjS to me, good luck its a lousy disease in every way shape and form. I cannot think of one good thing. :-)
I don't for the life of me know why anyone would want to get diagnosed with SjS , it does no good and there are no cures. We treat symptoms.....so diagnosis only matters if they won't get you on plaquenil or other approved treatments.

A comment on the possibility of MS: There was an article a year or so ago about a gal who was diagnosed with MS and ended up wheelchair bound for years. Then somehow she found another doctor and he thought she might have Sjogren's. After more testing he was able to put her on medication for Sjogren's and she regained her ability to walk and basically got her life back for the most part.

CNS Sjogren's can mimic MS. Not all rheumatologists are created equal.

Pre-diagnosis was basically my whole life -- aching joints, stiffness, super dry light-sensitive eyes, crazy allergies, progressively worse fatigue, always feeling like I hadn't slept, pain in places that I never thought about before, and of course the terrible dryness. I finally figured out that it might be Sjogren's based on my dry mouth and dry eyes, and went to see a rheumatologist for testing. That was 12 years ago.

Now, I'm seeing a really great Sjogren's savvy rheumy who treats my symptoms which has me working and functioning better than I have in decades! That doesn't mean that I never flare, but even flares are fewer and farther between.

Nearly 20 years ago I started having symptoms that my doc finally dx as "fever of unknown origin". For a week at a time...nearly every month or two....I ran a temp of 99+ degrees. I felt extremely fatigued, achey joints, some dizziness, dulled senses.....all very much like a flu. Even when my temperature was normal, I often had these symptoms.. I couldn't believe that I didn't have a fever at those times

That lasted for 4 or 5 years. Soon after that, I started the very dry mouth, dental issues, more arthritiis-like joint pain, and mild-moderate confusion and forgetfulness. I was finally dianosed with SjS a little over a year ago by a pos. lip biopsy.and am getting considerable relief from Paquenil and Evoxac. Still terrible teeth, extrremely dry skin, fatigue, and lately difficulty staying asleep at night. I seldom nap, so don't know what this new symptom is about!
I do have many days when I fell nearly normal, and when I "flare" , well, we won't go into details...you all know.

Anyway, Narey, that's yet another scenerio of what it was like before and after SjS diagnosis. Hope yhou can get on medication that gives you some relief.

You're all so kind to take the time to describe what you've experienced. I took a doc hiatus, sick of tests and all that. I ran into some insurance problems with some of the tests I had, and have a daunting expense, so that wa another reason to stop seeing the docs for a while. I figured I am not doing SO badly...

I'll probably pick back up again soon, seeing the great neuro and rheumatologist I selected.

Your saga sounds like my sister's story. She had symptoms of fatigue, joint pain, muscle pain, brain fog etc,etc, for several years with neg blood work. They thought she had Ms, myathenia gravis etc, etc. Finally she had an abnormal ANA and was dxed with Lupus and now gets disability and Medicaid, she is 42! They are thinking there is some genetic component to autoimmune diseases. I have Sjogren's but we share a lot of the same symptoms.... She was sent to psychiatrist because they said her depression must be causing the symptoms! Good luck!

I'm so glad to have read all your stories. You all sound like me. I am diagnosed but I never knew what symptoms were coming from what. I also have Celiac disease which is closely related to Sjogrens. For those of you who hav IBS I'd ask for a Celiac blood panel to make sure your not missing anything. Also when you have one autoimmune disease it's more likely that you'll get another. My eyes and mouth were dry for years prior to diagnosis. It wasn't until my nerves were affected and I started to have daily migraines that I went to a doctor and complained. My sed rate was also very high and I'll never forget the doctor saying to me that I looked so good for such a high sed rate.