Sjogren's Syndrome info
DIAGNOSIS STORIES

These personal stories are collected from our facebook page where people living with Sjogren's shared how they were diagnosed. 
I was diagnosed at 24 years old! I had always been a healthy, active female, in great shape! 
A few months after I had my son I started having extreme fatigue, extremely dry eyes, interstitial cystitis, joint pain, blurry vision, dizziness, weakness in my muscles. I went to my PCP multiple times who told me I needed to “drink more water” and “join a support group for new mothers”. I finally ended up in the ER with a severe headache and I had an MRI which showed nothing. I followed up with a neurologist who prescribed me migraine pills.
A few weeks later my eyes were so dry I developed corneal ulcers in my bilateral eyes , so I went to Callahan Eye Hospital and saw an amazing eye doctor who told me my eyes were extremely dry, and he wanted to test me for Sjogrens! I had no clue what Sjogrens was but he asked me if I was having other issues besides my eyes and I started listing everything off and that’s when he said he was pretty sure it was Sjogrens, but he wanted to send off blood tests.
A few weeks later he called and said everything was positive, all my SSA antibodies and my ANA, CRP.
I was then referred to my rheumatologist I have been seeing for 9 years. It has been a journey and I have tons of horrible symptoms. I take plaquenil and leflunamide, along with steroid pulses to keep my Sjogrens under control.
Originally my doctor thought it could have been MS but multiple MRIs later and it’s Sjogrens only. ~ Jessica Lane Sheets. 
Symptoms started at 14, diagnosed at 19.
ANA 1:2650, positive SSA and high ESR. I'm only 26 and have Sjogrens, Lupus and RA. Positive lip biopsy too. Been on methotrexate on and off since I was 19 then plaquenil six years and still bed ridden. Fatigue is horrendous, I don't even have good days anymore literally. ~ Breeann Walker
My story began with numbness in fingers, one at a time and then up the arms, down the legs and back, this all turned to pins and needles all within 2 years. It felt like my body was dying and only my heart and brain keeping me alive. Went to a neurologist and after many visits and a multitude of tests, discovered through blood work I had Primary Sjogrens with a Sensory Neuropathy. I'm on Methotrexate, Low Dose Naltrexone and Tamoltra for pain. Thank God I can still walk with walker, do my own housework and cooking. I'm 74. My prayers are with you all. ~ Jenny Daly Jenny Daly
I was diagnosed by my ophthalmologist. I has a swelling in my eyelid that I thought was a cyst. He said it was either lymphoma or sjogrens. After a biopsy it turned out to be both. I have to admit I was scared. After 12 fractions of radiotherapy the lymphoma has gone. Unfortunately I then had amyloidosis in the same gland and had it removed. Its been quite a roller-coaster for the last few years. ~ Debbie Machin
When I was around 10 years old, I had these fluid filled bumps on my hands and feet. Doctors didn’t know what these were and I was put on different drugs to help. In my 20s, I had vascularitis, constant urinary tract infections, sinus infections and tonsillitis. None of the doctors I saw put all these together, these symptoms were treated individually. In my late 30s, I began to get tired in the afternoon and I took naps, never had I done this before. I worked as a NICU transport RRT and it was a hard job with long hours, 12 hour shifts, so I thought that was it. After all of this, my boss told me to see a rheumatologist. At 40, I had my tonsils removed, saw a rheumatologist who diagnosed me because of my history, had a lip biopsy done and found out I was positive for Sjogrens. It has been a long road and I have to take lots of medications, blood drawn every 4 months, see eye doctor (my eyesight is going), dry eyes and mouth, plan my days, rest a lot and rely on people to help me. ~ Fifi Fargusen

My dentist suggsted I had Sjorgrens, which was confirmed within 2 days by my general doctor via blood work. I did the dental and optical screening all positive. My general saw no reason to do a biospy. My optician missed it for years, I suffered from cracked dry eyes for at least 3 years. I went to specialist but nothing more than care I was already receiving, my doctor and I have agreed that treating symtoms is all that is needed at this point. ~ Karen Kern

After years of complaining about multiple symptoms, a PA finally ordered bloodwork. I got a call from the rheumatologist in my medical group. This is what she said. 
" You have Sjogrens. It's an auto- immune disease that causes dry eye and mouth. Your appointment is " insert day here". Click. 
I'm lucky I even had seen the word Sjorgens before. Of course I immediately began research. Then further verified by eye and saliva tests. Its terrible that it took years to be tested for anything other than Lyme disease and thyroid disease. Or to be told " It's just anxiety". My quality of life had really deteriorated by then. ~ Diana Macgillivary Bruso. I kept getting thrush in my mouth. Sores on my tongue. Chapped lips. Felt ill and tired all the time. My eyes burned a lot. My PC told me nothing is wrong it’s all in my head and get more sleep! I switched doctors and my new PC ran tests and then referred me to rheumatologist. I’ll never forget it was the day before my 50th birthday & the rheumy diagnosed me & barely explained anything, told me to go to Sjogrens Foundation website & look it up! ~ Linda Porter



  • I went to three different doctors with just one symptom. I was tired. The third doctor ran a rheumatoid panel on me and sent me to a rheumatologist. I was diagnosed in 2016 with primary Sjogren's Syndrome. ~ Cassandra Cantu

  • ANA positive. Diagnosed by Rheumatologist in 2019. I was relieved because I thought I was going crazy. ~ Dee Fugate

I kept getting thrush in my mouth. Sores on my tongue. Chapped lips. Felt ill and tired all the time. My eyes burned a lot. My PC told me nothing is wrong it’s all in my head and get more sleep! I switched doctors and my new PC ran tests and then referred me to rheumatologist. I’ll never forget it was the day before my 50th birthday & the rheumy diagnosed me & barely explained anything, told me to go to Sjogrens Foundation website & look it up! 
~ Linda Porter
  • Bekki Henderson
    If you feel like you have Rigor Mortis; have no tears, no spit, no sweat, ask to be tested for Sjögren’s.
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  • Linda Moran Corbishdale
    Went to primary care for chronic pain. He ran blood tests and found it. Lip biopsy further confirmed. Now 8 years later there aren’t many systems in my body that aren’t affected
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  • Joanne Harris
    My Paratoid glands were swollen. The Rheumatologist said, it's Sjogrens m
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  • Amber Grigg
    My dentist diagnosed me with a lip biopsy and it felt good to finally know
    • Tracy Gray
      Still waiting on a diagnosis. Have a consult to hopefully get a biopsy done this Wednesday 🤞
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    • Cheryl New- Pike
      I was diagnosed in 2005 by a Nephrologist. It took several doctors and six years. I was told everything from Cancer to lead poisoning to anorexia to Barters Syndrome to finally Sjogrens. I was very relieved just to know.
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    • Louise Davenport
      I was diagnosed nearly 15yrs ago when I felt terrible after I had given birth to my son, my doctor in uk diagnosed it.
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      Eve Reaidy
      After a long suffering and keep telling me i have panic attacks , my dermatologist got me diagnosed and refered me to a reumatologist ! It felt the end of the life back to this days!
    • Jennifer Levie
      It took almost 5 years to get correctly diagnosed. I have Hashimoto’s and My ANA was always extremely high but other than that always seronegative. The lip biopsy being very positive as well as my symptoms led to my diagnosis. If you know something isn’t right with your body be your own and best advocate!

    • Sam Rose
      It was a joint effort by my optician at Specsavers and my dentist. My dentist asked if I had Sjogrens as my teeth were pretty bad.
      In the same month I had gone to Specsavers to get my dry eyes checked out. They gave me eye drops but when they didn't work, the optician told me that we needed to find out the cause of the dry eyes and not just treat the symptoms.
      I only had raised ANA and CRP in my blood tests. But I was referred to an eye specialist who said I had zero tear production. I was also referred to an immunologist who said I had Sjogrens despite not having the antibodies.
      I didn't feel anything to be honest. Well, not until I started on Plaquenil and that gave me my life back. Because I didn't realise how sick I felt until I went on that.




      • Lori Grant
        My pcp at that time said the blood coming from my throat was sinuses. I decided I was tired of opening my mouth and blood running out . I made appt with ENT that night he did emergency surgery to cauterized all places in my throat. I had already barely could whisper he kept doing test and he did a biospy and I can remember him saying I'm so sorry you have Sjogren. I knew nothing about it at all. Now I know why he looked so sad for me. I lost my voice for two years and have permanent vocal cord damage right off at the beginning.

      Margaret Rodriguez
      I was diagnosed in 2016 by an ER doctor, went in with a very bad pain behind my ear at first I thought it was an ear ache an my body was very hot an the nurse took my Temperature an it was at 102 an I was admitted to the hospital for a whole week at first the doctors couldn't figure out what was wrong with me because I didn't have an ear ache. But the pain was still there so they put me on IV a couple of days later I was better an the pain was gone an discharged. 7 months later the same thing bad pain in my ear Temperature the same with a small lump behind my ear same doctor that saw me the first time. He looked at my chart an said weren't you here a couple of months ago ( yup). This time he told me. Did you change you're routine, eating habits, sleeping late not getting enough sleep. An I told him nope. This time he did alot of blood work at first he thought I had the measles an I told him that I couldn't because I had them when I was I kid. Then he ran alot of blood work an came back with an Autoimmune disease (He said I think you have Sjogren syndrome an you're going to need to find a primary doctor an a Rheumatologist doctor, so I did. For a whole year I didn't feel different at all not intill 2017 that I felt different every thing change for me. I honestly can say that I've learn to deal with it, suxs but we all have to manage some how. Having Autoimmune disease is no joke especially Sjogren syndrome the fatigue, inflammation,joint pain muscle aches 😢but I'm learning how to control it.
    When I was diagnosed I was finally relieved, then John Hopkins took the diagnosis away, then I was confused. And at the same John Hopkins same day, the ophthalmologist said I had Sjogrens! Then still symptomatic, Mayo Clinic put me thru the thermoregulatory sweat test and said you have Sjogrens and bad, and we need to slow the nerve damage down! Now I am devastated because the damage is irreversible. That is one fine example of Sjogrens patients aren't crazy! Getting diagnosed is! Wasting our money needs to stop. Moderate health care needs to stop. I almost died several times, anyone says that this can't kill you? Is wrong. One wrong diagnosis, one wrong treatment, one ignored problem, almost killed me several times!

Matilda Tumim
Misdiagnosed with RA ten years ago, tested 4 years later from MS - stuff showed but neuro said small fibre neuropathy. Moved area - high immunoglobulins and SFN with very high sed rate and sicca led to lip biopsy which 100% confirmed Sjögren’s.
Postscript: now diagnosed with Overlap CTD with predominant Sjögren’s but a rare antibody highly specific for systemic sclerosis - no nailfold changes and no tight skin so not diagnosed. Got GI issues head to tail especially severe gastroparesis - blamed on Sjögren’s.

Kelly Fan
I am seronegative and have been suffering for over a decade...I have been to two rheumatologists, desperate for help. Because of bloodwork the first one said “you are so young, you don’t have this”...the second said “nope, bloodwork looks fine”
I have significant issues that include severe dry symptoms, but the more debilitating symptoms affect my central nervous system and autonomic nervous system.
I’ve been dismissed by medical specialists.
I recently got a schirmer’s test done - showing severe dry eyes...hope to go to Johns Hopkins for a lip biopsy. I am utterly desperate- got covid last summer and I’m a long hauler. On medical leave currently