If not Sjorgens, what might it be?

Posted , 9 users are following.

Hello everyone, I have a bit of an unusual question. My doctor diagnosed me with Sjorgens syndrome 2 months ago based on my symptoms, however the blood test came back negative. I know it's possible to have Sjorgens and get a negative blood result, but I was wondering if it might actually be something else. My doctor seems content to leave it at that, so I'm hoping people here might be able to help.

Basically my symptoms are dry eyes, occasional dry mouth, and dry swollen/puffy skin under my eyes. It seems like there's a lot of fluid retention or something under my eyes. I also lost about 5kg around the time the symptoms started, but that might have been from the stress I was under at the time (which may have been what triggered this in the first place). It doesn't sound like a lot, but I was originally 52kg (166cm) so I didn't have a lot of weight to lose really.

I've had my thyroid tested and that came back normal. Although my eyes are usually dry, I still easily produce tears when emotional or yawning, etc.

Was anyone misdiagnosed with anything else before Sjorgens? Or does anyone know what could possibly be causing this? I'm at my wit's end trying to find out for sure so I can actually do something about it. Thanks for your time!

0 likes, 23 replies

23 Replies

  • Posted

    All my blood tests came back new. So my Rheumo Dr said I am fine She didn't know what was wrong she up my lyrica meds. I have 1 Dr say Secca.  The the ENT said SS. I was so upset I knew I felt so bad My eye, ears nose mouth was so dry no tears nothing Finally I said I would go to diff specialists my self.  So the Eye Dr took the Shirmer test positive dry eyes. Then to Neuro positive for shaking vibrations and twitching He said SS and Neuropathy in my feet He gave me Xanax a trial My Gp even tho all blood test neg even for Lupus He said with your symptoms, it is SS because it is hard to prove So because of symptoms he says he agrees with other Dr's SS. My Oncologist said because of proteins and white cells going up off and on it says ? SS. So I find because I have been positive for POLMYOSITIS I also have SS  With SS you can only treat whatever symptom comes up at the time there is nothing else to treat.  I know if  that helps you but that was what I did

  • Posted

    Good question. It could be mixed/ undifferentiated connective tissue disease. Means you have symptoms of many illnesses of the autoimmune spectrum. I have been formally diagnosed with this, but also tested positive for Sjögrens.  I sure don’t know what I have; but do know I feel awful.  Not sure if my comments are helpful. Hope so😀

  • Posted

    Hi there! I accidentally responded to a comment meant for you. Hope you can find it. Google mixed or undifferentiated connective tissue disease. May help. In my experience the best thing we can do is find a good rheumatologist and treat presenting symptoms. 
  • Posted

    Blood tests come back negative a lot in people w/Sjogren's. Being on this site makes me thankful that I was diagnosed from symptoms before there was a blood test: No doubts! I was not put through all the ridiculous rigamarole folks go thru now in service to the stupid blood work. It messes with people's minds and spirits to go thru years of this back & forth. You sound like you have SS. I produced tears for many years after my DX. Didn't start using tear replacements until after a corneal abrasion. I've now had to go to a heavier duty eye drop, in addition to my evoxac.

    An eye doc explained one time that there was this irony in Sjogren's sometimes, dry eyes yet liquid collecting above and/or below the eyes. Total insult. Of course, that also comes with the aging process, so who knows?

    Start taking care of your eyes & mouth as if you have SS. Use special dry mouth toothpastes AND rinse, which help protect your mouth when used properly but cannot fix the dryness. They also do not dry out your mouth the way some fake sweeteners & various things in regular paste do, or the alcohol in regular rinses If you don't put in eye drops at any other time, use a drop or gel right before you go to sleep. (Gels take some getting used to.)

    Yes, I do now test positive on blood work every time. Some people's tests go back & forth. Very irksome.

    • Posted

      Thanks for your reply. I'll definitely look into the toothpastes and things. It makes me worried how it's going to progress since I'm 32 now, I understand it's usually people over 40 or 50 who get it

    • Posted

      I was diagnosed at about your age but am sure I had it all my life. Am 63 now. I am thankful not to have all the worse aspects that many here have. Time will tell what's going to happen to you. It's entirely possible that you might go 10-20 years or even a long lifetime without a worsening of symptoms.

    • Posted

      I certainly hope it gets better rather than worse! Fingers crossed
  • Posted

    Hi Shari:

    Sounds pretty much like my initial battle with Sjogrens. I lost weight, woke up one morning with puffy eyes I couldn’t get rid of—-I had aged overnight—-eyes felt like needles were jabbing them, dry mouth. After nearly a year and negative blood tests, I saw a rheumy who told me it was Sjogrens. I, too, told him my tests were all negative. He told me I actually didn’t want a positive one; because, it would mean it was worsening. Later, just for my own peace of mind, I tried one last thing and vehemently requested it: a lip biopsy. It came back positive and it was official. 

    I’m seeing another rheumy in Dallas soon. I live in Louisiana now, but need to see a good one. The one I have now isn’t good and I’ve come to find that with this disease one had to fight with every fiber to advocate for Solutions or coping mechanisms. 

    My face feels like plastic, tongue especially and the baggy eyes haunt me. But I’m coping better than I did but for bad breath issues from the dry mouth that make me depressed. 

    Either way, this is my new life now and that’s why we are here, to help each other. 

    Hope this helps-

    • Posted

      Thanks for your reply, that does sound almost the same as my experience. Have you found anything that helps with the puffy eyes? I'm seriously considering some kind of cosmetic procedure to do something about it

  • Posted

    I doubt you have Sjogren's Syndrome. My blood test is negative but my ENT suggested a lip biopsy to get a real positive or negative test result. My lip biopsy is negative no Sjogren's. Since you don't have salivary gland swelling and extreme dry mouth and eyes and muscles weakness and fatigue you don't have Sjogren's. There are 10-20 other diseases have the exact same symptoms as Sjogren's. I wish I knew that before I got the lip biopsy. Cause I'm suffering with the complications from it which is numbness tingling burning permanent nerve damage on the bottom lip. What ever you do don't let your Dr talk you into a lip biopsy you will regret it. Do your research cause dr's don't know everything.

    • Posted

      I've had SS forever and have no swelling of salivary glands. Some of them haven't worked for at least 20 years, but there was never any swelling. It took a long tine for me to get to "extreme" dryness, assuming I'm there now. She's been diagnosed at a young age from symptoms. Maybe she doesn't have it, but there is no absolute requirement that we have certain symptoms for diagnosis. As a matter of fact, swollen lymph glands with which so many suffer here would have gotten everyone cancer diagnoses back whe n I was 1st diagnosed and they shouldn't have been considered for SS where I live.

    • Posted

      Where did you go to medical school? Sorry, not meaning to be flip, but I think some comments can be very reckless...
    • Posted

      Chris I'm just speaking from my experience and what my DR!!!! Told me about the symptoms of SS. And man I have all the symptoms of SS but all my tests are negative. Besides there are several diseses out there that have the same symptoms of Sjogren's!!!! And SS is very difficult to diagnose because there are so many different diseases with the same symptoms. Plus I do my research so I can talk about this unlike you.

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