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Sjogren's Syndrome

Posted , 11 users are following.

brenwag68
brenwag68

Hi,

I am new on here, so I am not sure how this goes... I just came home from my rheumatologist "he's a new doc for me" I was diagnosed approximately 3 years ago as having Sjogren's but also possible other non specified autoimmune diseases. I have all of the symptoms of Sjogren's but also Lupus (Lupus does not show in my tests) I saw a new doctor today & he tells me that he believes that I do not have Sjogren's but Sicca (I looked up Sicca & it says it's Sjogren's) it has shown off & on in my blood work that I do have Sjogren's. I am having a lot of problems, no saliva, no tears, bad skin, problems with all my organs, cataracts (had them for 4yrs, I am 48) the list goes on & on. My doctor is not taking anything seriously, but I am getting sicker & sicker. I'm not sure what to do.... anyone that could give me advice, I would gladly appreciate...

2 likes, 53 replies

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  • Mikki1220
    Mikki1220 brenwag68

    Posted

    Here is my story.  Back in 2012 I had my first pancreas attack.  Now speed up to 2016 and several attacks later, March of 2016 I started losing my vision.  Currenlty my right eye is at 20/80.  Went to..ready??? 12 different specialist and all can see I was going blind but no one could figure out why. Finally my gastro doc ran an auto immune blood work panel that came up abnormal.  So he then advised to see the Rheumatologist and thank God I found a good one.  He ran a new panel that came up Sjrogrens.  I educated myself on what it was, what I need to do etc.  He told me even though the common symptoms is dry mouth and dry eye, it is the dryness throughout my body that causes the massive inflammation which puts pressure on my eyes hence massive blurry vision. Then in the beginning of this March, I had another pancreatic attack.  My gastro doc diagnosed it as AIP-Auto Immune Pancreatitis.  He has since consulted with my Rheumatogotist and they along with my Cardiologist work together on a game plan.  I am blessed to say we work as a team dealing with meds, losing weight, exercising and how to handle flare ups and attacks.  Unfortunately, I never know when a pancreatic attack will hit.  But when it does, the pain is so bad, it brings me to my knees in pain and hardly able to breathe.  For this, I always must go to the E.R. for 24-48 hour IV flush no food diet to let the pancreas rest.  But all my doctors agree that this is attacking organs.  For me right now, its attacking the pancreas and my eyes.  But I am a warrior and I will prevail.  I work out 2-3 times a day, I belong to Weight Watchers.  I do what my docs tell me and if I feel uncomfortable about something, we discuss it.  Then when a flare up hits like my last one that lasted 6 long weeks.  I just sit and wait until it passes but once it does, I am back up and moving.  I refuse to go down without a fight. 
    • brenwag68
      brenwag68 Mikki1220

      Posted

      So sorry for all your troubles...I know it is so frustrating... I too have eye problems, my optometrist said that I have early onset cataracts & due to dry eyes I don't see well & cannot drive at night. I always have stomach issues, h pylori, nausea & difficulties going to the bathroom due to lack of fluid... I too have flare ups, can sometimes hardly get out of bed... my cardiologist says that because of lack of fluid my organs are shutting down but my rheumatologist doesn't agree... I am looking for another rheumatologist... take care

    • Cowgirl918
      Cowgirl918 Mikki1220

      Posted

      I have a great team also at Indiana University. I finally feel that all of my issues are being addressed and there is a team approach. My ANA is positive for Speckled Pattern Lupus and I have Sjogrens. I am treated as Overlap so it is like waiting for the next symptom to rear it's ugly head. I support the fact that a high level medical center with trained specialists is vital for autoimmune patients. It took years but I feel that I am finally in the right place with the best physicians. Good luck,

    • aitarg35939
      aitarg35939 Cowgirl918

      Posted

      If only we could persuade one of the new med schools here to take an interest. (Texas)
  • brenwag68
    brenwag68

    Posted

    Well today I went to the dentist (having a lot of issues with my teeth due to dryness) come to find out I'm going to lose all my teeth. The dryness is so severe that my gums have receded so badly that my teeth have loosened & I have constant pain... going Wednesday to have two extracted & next month for a consultation to have implants... I am so bummed...

    • aitarg35939
      aitarg35939 brenwag68

      Posted

      Maybe we need to re-dub our acronyms:

      SS(B) = Stubborn Sisters (& Brothers)

      because we do keep putting one foot in front of the other!

      You are a strong woman, Bren, and you rock.

    • brenwag68
      brenwag68 aitarg35939

      Posted

      Thank you so much 😊.... we are all strong!!! We need to be, we need each other's support, with it we can get by....

  • cath23317
    cath23317 brenwag68

    Posted

    Ah bless you I have Lupus as well as Sjogrens and many more illnesses, I had to keep on to my G.P that there was something more than R.A with me, so he sent me to see this rhumatologist, he took blood tests come back in a fortnight, so I did, he went through a several questions and examenations and the he said it's Sjogrens I said whats that, he explained to me, and all the questions and examenations made sense to me. 2 years down the line I was diagnosed with Lupus as well, they are 2 different illnesses in my case any way hope that's been of help xx

    • brenwag68
      brenwag68 cath23317

      Posted

      Hi... my doctor checks me frequently for Lupus (I have all the symptoms of it) my blood work shows several autoimmune diseases but only pinpoints Sjogren's at this point... my doctors I feel in my opinion are not doing enough, the only doctor who seems to be up on anything is my cardiologist, who seems to know more about my autoimmune system then my rheumatologist... go figure!?! I have pain in all my organs, my rheumatologist says it's due to fibromyalgia. I said to him, I thought fibromyalgia was pain in the joints NOT organs. I told him that I think fibromyalgia is a made up disease by doctors who do not want to take the time to find out what REALLY is wrong with you... he wasn't amused 😜

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