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If not Sjorgens, what might it be?

Posted , 9 users are following.

shari10176
shari10176

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

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  • diane03050
    diane03050 shari10176

    Posted

    I have went to every specialist possible.  Rheumo blood test Neg.  Gp  All  blood test even Lupus neg..  Oncologist says Secca.  Neuro says spine bad Nerve damage really bad Is going to do a test to see why I twitch and vibration didn't ease with Xanax so he D/C. Eye Dr/ surgeon cataracts and Schirmer test positive.  Oral Surgeon says very bad dry mouth everything else great.  Pain Dr shots in back several times and back worse.  Pain med give to me.  Everyone important to my POLYMYOSITIS is positive.  I am also forgetting words and spelling Neuro Dr took memory test and EEG is fine. What is it???????

    • aitarg35939
      aitarg35939 diane03050

      Posted

      Diane, I don't know why but some neurologists don't care about word issues. Maybe it's because they can't do anything about it. It us very distressing to us though.

  • christine00342
    christine00342 shari10176

    Posted

    My bloods came back negative so am having a lip biopsy to determine whether Sjögren’s , my Dr said bloods don’t always show antibodies but lip biopsy is only way to say yes or no !!!

    • Vette1
      Vette1 christine00342

      Posted

      Don't do Christine you will regret it! My Dr told me the same. 90% of lip biopsy results are inconclusive or negative. If you have a negative blood test for Sjogren's Syndrome stop there. I wish I didn't do the lip biopsy and now my bottom lip is completely numb no feeling at all. I'm having tingling burning sensations cause a lip biopsy you will get nerve damage. My lip biopsy result is negative but now I have to live with this numbness of my bottom lip forever. No more lipstick or kissing my husband. This surgery has change me in an awful way. I hate the way I feel I'm constantly looking at people lower lips. When I drink my lip feels split in two and like an Alien. I miss my lip before this surgery. You should do alot of research ask your Dr alot of questions and get several opinions. I really don't want another person experiencing what I am with a lip biopsy. Some folks on here will tell you the opposite(like Lilly) and try to talk you into getting it. Next month I have to see a neurologist to determine how bad is the nerve damage on my lip. Please please don't do it Christine. Reply

    • chris08587
      chris08587 Vette1

      Posted

      I agree with you totally as in it(biopsy ) will most not likely yield accurate results. You are brave/ kind to share of your experiences. My rhumie offered the test to me but didn’t recommend it for the reasons you have mentioned.
    • chris08587
      chris08587 christine00342

      Posted

      I think that is very bad advice from your dr. I test positive for ss. My Schirmer(sp) not too bad. Don’t see a need for the test. Diagnosis is so important so I understand your frustration, but my dr advised me against it. I wouldn’t get it done yet if I were you. 
  • oly._03278
    oly._03278 shari10176

    Posted

    Hi. Thank know you have a lot of opinions here and they all matter. But I’ve had a lip biopsy and but for very little tingling, it feels fine. I feel no different than I did before and it came back positive. Hanging that diagnosis, as I said before, gave me a peace of mind. How your lip biopsy goes depends on the experience of the ENT. I have a great one and feel just fine having had it. 

    Hope this helps-

  • flo76085
    flo76085 shari10176

    Posted

    hi

    May I check how are you managing this disease?

    thanks

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