What was your first symptom?

[A66eyroad]

Arthritis-like pain in my knees & fingers at age 23, saw a doctor who said, "You talk a good game, but this is not arthritis."

Ulcers in my mouth and the insides of my nose at age 28, my doctor said he wanted to do a "serum porcelain level" because I was a crock of sh**.  He said if I would stop sticking my fingers in my nose, the sores would go away.

I went to three more GPs, a hand specialist, an allergist, an oral surgeon, an ophthalmologist, a chiropractor, two dentists, a surgeon, an OB/GYN, and an ear, nose and throat specialist. I was tested for allergies and gall bladder disease and stomach ulcers, had MRIs and nerve conduction studies, placed on a heart monitor, and thought to have everything from ADD to a brain tumor to an overactive imagination and a bad attitude.

But surprise! It's Sjogren's!

(Sero-negative)

[CMNK12]

Well lets see... hashimotos at 27. Before that pleurisy, anticardiolipin ab, miscarriage late trimester, ana positive. Then fastforward to thirties possible stroke...incident left a black hole on mri in my brain. left sided weakness at intervals with flares ,strange sensations in lower legs like a tight stocking on them ,dry eyes.
   Now 40.... weakness, fatigue, the above, dry mouth too, and add some kind of lung inflammation that makes me cough and short of breath.and now joint pain. I think that is it
   I think we are all so different in presentation and it is perplexing.

[Ginger]

Sun sensitivity, fatigue, skin rashes, low grade fever, body aches on and off.  Took about 5-6 yrs to get Diagnosis. Noticed the dry eyes and mouth for the last year or so and now

getting sores that don't heal in my nose. Don't feel so alone since I found this site though. 

[madderakka]

Dry mouth and throat and fatigue. My doctor thought I had allergies because my mucus lining in my throat was thick, but taking Claritin made no difference. It took me 5 more years to be diagnosed.

[Cindy]

My first symptom was episodes of joint pain. I had weird sensation all over my body that I thought it was normal. It was this year after a big flare that everything else arrived. The joint pain started 6 years ago and everything else this year although I had mild dry eyes since 2010.

[shellthebell]

I am not sure of my first symptom, but I have had off and on swollen glands since childhood. I began to realize something was going on was when I was 37. I was diagnosed with hypothyriod and after that it all came at me.

I went to the eye doc for a bump on my eyeball. Turned out it was my conjuctiva separating from my eyeball due to dryness. I also began having trouble swallowing due to lack of saliva. My skin is really dry as well and I began to break out if I got in the sun. fatigue and brain fog. Then the scarier stuff began to happen.

right side bell's palsy.

paralysis/ severe weakness of my legs, tremors and other bouts of weakness in my arms and legs, and muscle spasms or twitching

Aphasia

joint pain in my feet and one finger (but it really hurt)

and most recently hypoglossal nerve palsy (tongue palsy) and atrophy

I have been on Plaquanil for a while now and I don't have the joint pain much anymore and it seems to be helping with the dryness a little bit. Hopefully I won't have anymore big stuff either.

I am ANA positive, speckled I believe, SS-a positive, thyroid peroxidase was 32 times normal when I was diagnosed, I am anemic and B12 deficient, also was positive for o-bands on spinal tap.

[LisaMarie]

I was just diagnosed in the past year.  Age 47.  However, looking back, I think I've had symptoms all of my life.  Just never really put it all together until I thought that my extreme dry eyes were causing me to have heart palpitations and making me fall asleep at my desk at 8:30 in the morning.  Zero energy and I was blaming my eyes because I couldn't keep them awake. 

Optometrist scored me a zero on the test.  Said he's never seen such dry eyes.  Started treating the first symptom and recommended I see an Rheumy that knew about Sjogren's (My response, "Oh, that's what Venus Williams has?" because it had just been in the news.)  With that knowledge I started researching and scheduled an appt with the rheumy (Dr. Wonderful).

Things with my past started coming together.  As a teen, I always complained about dry eyes.  I have brittle nails and hair.  My skin was always dry and pale because I couldn't handle being in the sun like others.  Sleep!  I was one of those odd teens that would go to bed early all of the time.  My parents never had to set a bedtime for me.  And I would sleep all night and a lot during the days if I could.  But I still would have nights where I couldn't sleep at all. 

At the age of 22, I had my twins.  Very good babies.  I could get somewhat of a normal sleep in but I thought I was allergic to fabric softener because when I would sit down to fold laundry I would fall asleep on the pile of clothing.  I couldn't help it. 

Driving.  I have a hard time driving with my hands.  Yup.  I'm one of those that uses my legs to steer the vehicle a lot.  Drives my husband crazy but my arms/wrists get extremely tired and week.  I'm really good at making turns though. And since my arms/wrists are resting, if I need them, I can use them.  It has been that way since my early 20's.  Treated for tennis elbow once because I complained but it never really went away.

Those nasty women issues.  I thought it was normal.  itching.  I remember as a teen getting busted and teased by a boy at school.  He noticed me scratching with a corner of a teacher's desk.  I didn't mean to do it.  But I was itchy and just had to do it.  Talk about embarrassing.  I love making love to my husband (did my first husband too) but the pain scares me.  Sometimes it wouldn't be bad and other times it would.  There again, I thought it was normal until I came here.  I've tried yeast infection treatments but it never really goes away.

Pain here and there.  Normal right?  When I started running 3 years ago, off and on I would get what I thought was shin splints.  But it wasn't.  I wouldn't run for awhile to see if it went away.  Never really did.  Until Plaquenil.  Was told about 7 years ago that I have a slight curvature of the back and arthritis.  Exercise/stretching and advil to help that.  I tend not to complain about my pain too much but it is there.

The other symptoms that I've noticed that I just brushed off...during that period where I was falling asleep at work, came along the facial numbness, the numb and tingling wrists, my scalp tingles a lot and breaks out and palpitations. 

I've also have pleurisy diagnosed several times in the past 10 years.  Still get a sharp pain when breathing.  Comes and goes pretty fast.

Pretty much sums things up for me.  Blood work is negative.

[Friedbrain]

It's probably too late to ask for people to do this but.......it would be really interesting to read the symptoms along with seeing the Sjogren's (/autoimmune) antibody results.  With such a wide range of symptom progression leading us to where we are today, is there any correlation with the antibody results? 

If people could go back and edit their posts in this thread with their autoantibody results, I think it would be really interesting!  I will go back and edit my post, which is early in this thread but, for example, I'm SSb positive (SSa? negative), positive for TPO (and on/off positive for ANA speckled and anticardiolipin)

[lolo1979]

First symptom occurred around age 25 - my opthamologist told me I had dry eyes.  I was young and totally unaware of autoimmune diseases, so I thought nothing of it and did nothing to treat it.  My eyes were not bothering me, so I assumed dry eye was a problem that could come and go.

Around that same age, I began experiencing shortness of breath.  Went to a pulmonologist, and all tests were "normal". You know the drill.

Fast forward to age 31, I was trying to get pregnant with my second child.  Got pregnant but then had an early miscarriage at 6 weeks.  My OB-GYN was nice enough to run bloodwork to check for anomolies, even though it was "only" my first miscarriage.  That's when I discovered I had a positive ANA of 1:160 homogenous pattern.  At the time, I was not having too many obvious symptoms.

Fast forward another month, I got pregnant again.  Literally overnight, my eyes and mouth became super dry.  I was running a low grade fever. My body was freaking out from being pregnant, and my immune problems kicked into high gear.  I developed a subchorionic hematoma around the placenta, and was at risk of another miscarriage.  But luckily I made it through the first trimester, and the hematoma resolved. My immune system also seemed to have calmed down for the rest of my pregnancy.  I had my second child successfully.

6 weeks postpartum, I had another nasty flare. This one brought joint problems and tingling legs and feet. Major fatigue. The dryness was still there and had been since I got pregant.  I went to the rheumy and got diagnosed. 

The only thing that has ever showed positive in my bloodwork is my ANA, which tends to hover between 1:80 and 1:160.  My RF does show a factor of 6, but that is considered "normal". I often think that number will probably end up creeping up as the years go by.  All else is normal though - CRP, ESR, SSA, SSB...all normal.

I am still diagnosed sjogrens and on plaquenil and evoxac.