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I have been being tested for Lupus & Sjogrens for several months now.

Posted , 5 users are following.

celia0407
celia0407

 Could some of you have been diagnosed with either Lupus or Sjogrens please share how you got diagnosed. The Rheumatologist I'm seeing is not very good. I'm going to find someone else. We have a friend that had a lower lip biopsy & that's how he was diagnosed with Sjogrens. I have several of the symptoms of both Lupus & Sjogrens but this doctor doesn't seem to care whether he finds a diagnosis or not. He's a little strange & he's lost other patients because of his behavior toward them. I will appreciate your help. Could you also list your symptoms. Thank you, Celia

1 like, 15 replies

15 Replies

  • shira75032
    shira75032 celia0407

    Posted

    This is a great question Celia.

    I was diagnosed with SS based on positive ANA blood test though serology non-specific to SS, parotid salivary gland and eye involvement with very positive Shirmer's test (0mm).

    I also have skin inflammation, swelling and a variety of allergies though my diagnosis was not based on these symptoms.

    Very few people actually go through lip biopsy from what I've heard, though that's a definite way to get an accurate diagnosis.

    What are your symptoms Celia and what have your blood tests shown?

    • celia0407
      celia0407 shira75032

      Posted

      Hi shira, thanks for responding to my post. My symptoms are exreme fatigue, my tongue burns, but I swish with Nystatin & that helps. Often I get what feels like ulcers in my mouth & on the sides of my tongue, my lips very dry & the sides of my lips crack & hurt. I'm always putting some type of lip balm on them. I suffer with headaches - mostly migraines, I have low grade fevers & am usually too cold or too hot! I have a red rash on both cheeks & on the right side of my face - but not butterfly shaped. My knuckles on my hands turn red very often. I've had some hair loss. I have arthritis bad in my hands but it's not RA. I have Gerd even though I take Nexium twice daily & had the Nissen Fundoplication procedure done in 2007. This past April I woke up one day & my arms & legs were extremely weak - like my legs couldn't hold me up. I've had to resort to using a walker or if we have to walk very far my husband has to push me in the wheelchair. I have a friend who has Lupus & she told me at one point early after her diagnosis, she had to use crutches because of the weakness in her legs. My Rheum is not very good - he's taken blood work but doesn't tell us much about it. He's strange - he doesn't want me to tell him how I feel - he wants to do all of the talking & most of it we don't understand & he doesn't want us to ask questions. I'm  going to stop going to him & find someone else. He's lost other patients because of the way he treated them.

      if anyone has any information that might help - please let me know.

      Thanks, celia0407

    • shira75032
      shira75032 celia0407

      Posted

      I definitely think you must find another rheumy. He sounds awful. You have every right to know your blood test results. If I may ask, how old are you Celia and how long have you been having these symptoms for?

      Have you been to a neurologist to check for MG (regarding your muscle weakness)?

  • morelia100
    morelia100 celia0407

    Posted

    Both Lupus and Sogrens are autoimmune diseases. They overlap in their symptoms. I saw a rheumatologist because I thought I had rheumatoid arthritis due to sudden and extreme pain in some of my joints. Blood tests indicated that I had Sjogrens. My symptoms included allergy sensitivities, dry mouth, dry eyes, pain in joints, bloating after eating, acid reflux, often getting sick with colds, irregular menstrual cycles, poor control of body temperature, and frequent need to urinate. Most of my symptoms are gone now or greatly diminished after drastically changing my diet. If you are interested, you can make many non-invasive, no side effects changes that can help improve your health. Not all choose this natural route, maybe because it is more work. If you are interested, I can share more details about what is did. Best of luck to you in figuring out what you have.
    • shira75032
      shira75032 morelia100

      Posted

      Hi Morelia, just wondering how the symptom you mentioned of having to urinate frequently is related to Sjogren's, as I too have this symptom.

      Thanks!

    • celia0407
      celia0407 morelia100

      Posted

      Hi morelia, I listed most of my symptoms in my reply to shira75032 above, but I would be interested to know anything you think might help me.

      Thanks, celia0407

  • suncat
    suncat celia0407

    Posted

    i havethe same problem

    theydont care here in sydney..Im going back to the States  trying to find also  immunologist Any chance is your balance ever off??

    • suncat
      suncat celia0407

      Posted

      i just havebalance when i walk and turn sometimes...I hope it wont get worse????????does your mouth dry all the time??????and how abotsinus dry  meaning nose
  • Cloch47
    Cloch47 celia0407

    Posted

    I was diagnosed with Sjogren's and cutaneous Lupus based on a blood test and skin biopsy. It took 6months to get there,

    although I understand that is comparatively quick compared to

    some people. My symptoms were extreme fatigue and rash on

    arms, hands and chest. I am on Hydroxychloroquine and I must

    say I have improved significantly, although recently Neuropathy has hit me.

    hope this helps.

    • shira75032
      shira75032 Cloch47

      Posted

      Hi Cloch, how long were you on the Hydroxychloroquire before you noticed an improvement?

       

    • Cloch47
      Cloch47 shira75032

      Posted

      It took 4 months before I felt the full benefits. I still get short

      episodes of fatigue but nothing as crippling as before. I have

      also learned to pace myself which is important, I now know not

      to overdo things, and have accepted that I'm not going to be

      able to be as active as I used to be.

    • shira75032
      shira75032 Cloch47

      Posted

      That's great Cloch, I tried taking it and couldn't continue due to side effects. I couldn't even take 100mg once a day.
  • suncat
    suncat celia0407

    Posted

    celia  hello  i just got on 25ms prednisone can yousleep   on it and does it help us?????I hope ypu are well and enjoy you text    all my best suncat
  • jerseygirlinsc
    jerseygirlinsc celia0407

    Posted

    I'm just getting started .i thought i had hashimotos and my doctor ran an ana bloodwork and found i tested positive for sjogrens though it was only a 2.she's still testing for other things ,meanwhile i'm set up to see a rheumatologist .my symptoms are off the charts...panic and anxiety,fluid retention ,vasculitis ,carpal tunnel,nightmares,hear rate isdues ,high blood pressure ,dry eyes ,mouth and skin , massive widespread pain,menstrual issues and thyroid problems to name some.
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