Sjogren's Syndrome

Posted , 11 users are following.

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

53 Replies

Next
  • Posted

    Brenwag68,

    I would look for a new doctor. You can be seronegative (not positive in your bloodwork) and still have Sjogren's (up to 30%) of folks test negative for SS.  In any event it is treated the same. If your current doc won't treat you with Evoxac, Salagen or Plaquenil, find another doc who will treat your symptoms regardless of what the bloodwork says. It is frustrating.

    Good Luck!

    SjoDry

     

    • Posted

      Thank you so much... sometimes I feel I'm going crazy... I'm sick all the time. I'm weak, exhausted... I am taking pilocarpine but that is it. I was taking plaquenil but I didn't notice any change so the doctor took me off from it... Today was a new doctor, I never saw him before. I didn't like him from the start... I am having so many problems with my eyes, ears, mouth, nose, I am having problems going to the bathroom, I have pain in my organs & lymph nodes. It just goes on & on. So often I feel like I am dying... just not sure where to find a good doctor... I thank you.

  • Posted

    I too recommend a new specialist. I had to move because they wouldn't take my symptoms seriously. Are you in the uk? Of so what region?

    • Posted

      Thank you... I live in NY, USA.... its so hard to find good doctors...
    • Posted

      If you can get to NJ..Dr. Frederick Brandt is my doc and he has offices in North Bergen, Jersey City and Secaucus
    • Posted

      Oh thank you... I will definitely give this some thought... I need to do something... I was so depressed when I came home, I thought this time I would get some answers, but all of you & your kind works is really helping me a lot. Thank you

    • Posted

      Oh sorry. I know uk better. I know of a very good specialist in Behcet's (which I have....very similar). They usually treat other forms of vasculitis. His name is Dr Yaclzici. He is a rheumatologist. Wonder if he would be good on Sjogten's. But the vasculitis foundation in the US should be able to suggest someone good.

    • Posted

      thank you so much... I would love to travel to the U.K., my husband & I would like to one day... I have family there somewhere 😊 

    • Posted

      No, I wish I did. I have been thinking of going through ancestry com to look up info on my family, when I was young I looked through my families "family tree" (book) & found out that I am a long, long, long off relative of Queen Anne (Stuart) I know my great, great grandfather came from the U.K. to USA by boat, back in the late 1800's. He died long before I was born... I have always been interested in anything that dealt with the U.K. So someday...

  • Posted

    Greeting, My bloodwork showed Sjogrens high and auto immune pancreatitis.  I was just diagnosed last August for Sjogrens and last week for the auto immune pancreatitis.  Spent from March to August losing my vision and legs swollen all the time.  Finally, the right doctor did the right bloodwork.  Weird that your blood work shows on and off with Sjogrens.  Makes me question if each blood work test you do, provider requests a Auto Immune panel.  If they don't that may be the reason you don't see it and when they do request it, you do.  Sicca is another name for Sjrogrens and if the Rheumatologist you just went to today doesn't know that, then he is an idiot.  Find someone else asap. We all have  alot of the same symptoms and on the same meds but you need to find a better specialist. 

    • Posted

      thank you... I know, I looked up Sicca & it said Sjogren's... it is so frustrating... I also have all the symptoms of Lupus too... I have been diagnosed with Raynauds, Neuropathy, Barrett's esophagus, I have migraines. I get infections all the time, eye problems... it's just never ending... thank you

  • Posted

    Sicca is just the name they give for Sjögren's that doesn't show up in your blood work or by lip biopsy. The only advantage I have found for having a confirmed diagnosis now is that my doctors, optician and oral consultant at least know that I have a connective tissue disease and I am on an immuesuppressant now - but many aren't and, to be honest I'm not sure it is doing much as all the upper dryness is flaring and my Raynauds and other stuff is too. There are no real treatments for Sjögren's - just sticking plasters. We need more sufferers to be properly diagnosed in order for more trials and research to be done.

    • Posted

      Also join the Sjogrens Foundation.  They are full of knowledge about SSI, Clinical trials, Walks..etc. 
    • Posted

      Thank you... my lip biopsy came back inconclusive because of the severe dryness & amount of scar tissue. The skin inside my mouth peels right off...

    • Posted

      Ugh that sounds awful. My sicca isn't that bad - just dry eyes and back of mouth/ throat and nose. But my Raynauds is bad and I was originally misdiagnosed with RA - often have long spells of feeling generally rubbish. My lip biopsy was 100% positive and I'm glad this gives me a formal diagnosis and clarity but not much else.

    • Posted

      My raynauds & neuropathy is real bad too... I use a cane to walk most of the time, I am 48 years old (but I'm real small & look much younger) but I feel 100 years old... my left side goes completely numb so I fall down & I have syncope seizures as well...

    • Posted

      It sounds to me as if you need to find a neurologist who is good then. Seronegative Sjögren's is more closely linked with neuro symptoms and Vasculitis I'm told on good authority. So a good neurologist may know more than a big standard rheumatologist. I realise the USA is huge but I know that the John Hopkins have very good Sjögren's experts. I live in Scotland so can't help you I'm afraid.

    • Posted

      Thank you... I do have a neurologist but he said that I needed the rheumatologist & the rheumatologist said I need a neurologist.. it feels like neither one knows, either what to do or doesn't want to bother so they try to pawn me off on each other. Every time I asked my doctor today, he just said I don't know. So what am I paying him for!?! FRUSTRATING!!! My original doctor sent my labs to John Hopkins, that is where they felt it was Sjogren's, but it does show other unspecified auto diseases... 

    • Posted

      Could be undifferentiated connective tissue disease (UCTD) if various things have shown up in your blood but nothing specific? I've been where you are - bounced back and forth between rheumatology and neurology. I don't have to pay but services are very stretched here. Not sure where I stand just now as not yet met my new rheumatologist. I had to move around to two more hospitals (relocating for other reasons) to finally get rediagnosed and treated. I always feel it could fall apart badly now having been hospitalised four times in 2015. Hey ho!

    • Posted

      So sorry to hear that... I had once emailed an online doc, questioning him as to what may be my problems, he thought it was very probable that I had Lupus, because it could take years to show itself,  but when I brought this to my doctor he said that I should not trust anything I read online. So that is where it ended... so sick of incompetent doctors... I hope this year is better for you...
    • Posted

      To tumtum-I agree 100%. My rheumy said I didn't have SS but my neuro did right away and I tested positive. Have a ton of symptoms and as I posted earlier develped a posterior nosebleed from SS dryness and needed emergency surgery. My rheumy said all 3 tests were false positives. I don't see him anymore! to brenwag68-Find a new dr and trust your gut.

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.