Hello Everybody, I was just diagnosed this week after having many years of weird symptoms. I am so angry that it took so long to diagnose me. I wish I had a nickel for every time I was told it was in my head. I have been lurking around this forum for about a week and am very impressed with the compassion and support you offer to other members. I have alot of questions about this disease and am hoping someone can help me.
-My ANA was positive, Rheumatoid factor positive, SED rate positive, SSA antibodies positives.
-If Rheumatoid Factor is positive (mine was 162) does that mean you have Rheumatoid Arthritis also or is the positive RF something that goes with the Sjogrens.
-SSA Antibodies (mine was 39) is this a bad result?
-Doctor put me on Plaquenil, will this help my body rid itself of positive results. Are these antibodies always present.
-I have bad days but for the most part I do function well. I know everybodies different but was wondering how bad people deteriorate from the time they were diagnosed.
I feel guilty about asking others that are worse off than me all of these questions. I am just feeling a little overwhelmed right now. Thank you for reading all my ramblings. I look forward to getting to know all of you in the future.
Hello, Collygirl, welcome to Sjogren's World.
Of course you're overwhelmed, it's understandable! You've been given a diagnosis of a disease that's hard to research, misunderstood, and possibly downplayed by your doctor...what's not to be overwhelmed about?
In answer to some of your questions...RF (Rheumatoid factor) is a marker for SjS as well as several other rheumatological diseases, and it's presence doesn't mean you automatically have Rheumatoid Arthritis.
Anti-SSa is more of a qualitative test than quantitative, meaning that if its positive, it's positive...degree of symptoms doesn't seem to coorelate..some people with no antibodies at all (seronegative) have extreme symptoms, while others with very high counts of antibodies can have relatively mild symptoms.
Plaquenil may or may not stop or slow the production of antibodies, and if production stops, th body can eventually get rid of the antibodies. This doesn't mean that the disease is cured unfortunately, once you have SjS, it's always there, antibodies or not, symptoms or not...the potential for a flare is there.
Although most literature describes SjS as a slowly progressive disease, some people never get any worse than they were when diagnosed...some even improve if they were diagnosed during a big flare and it recedes. Some people show a rapid increase in symptoms right from the start, and some really do progress very slowly with symptoms that respond well to management and treatment.
Welcome Collygirl!
I can certainly understand your anger, I too went through anger and a complete range of emotions when I was first diagnosed in September 2009. I would like to say that I no longer experience them but unfortunately I do. I have gotten better with dealing with the emotions though, so that is something! and the anger that I felt is not felt as much as before. I am learning to cope with this disease, I might not always like it but I can't take this disease away. Sjogren's and I are in this together no matter how I look at it.
You have found a wonderful place! There are so many great people that are willing to share with you. It was nice to meet you!
Welcome to the group. We ALL can sympathize on how long it takes to get diagnosed. Me it took 6 years. I heard everything from "probably something you got from your cat (Didn't have a cat when the debacle started) to "we are sure it is some type of cancer but durn you are not sick enough or showing the correctly symptoms. Excuuuuuuse me? The only good things going thru all the heck were 1) i understand drs better 'used to have they know everything attitude :D Ha! 2) I was tested for TONS of stuff "though I am not sure if diff drs ran the same tests" and 3) going thru a possible cancer diagnosis: I got acceptance and my head straight around that soooo the SJS diagnosis was almost a relief. Anything like this is hard to accept. I finally got so sick and tired of letting a diagnosis tie me in knots, that I decided I'm just going to go on and life my life & deal with it when I have to.
I feel lucky as my symptoms are only 1) lotsa teeth cavities 2) odd bloodwork #s 3) easily gotten sinus/throat infections that take 2 rds of antibiotics to cure 4) some fatigue -but I can usually feel it coming and newly 5)a rash that I notice on my feet that doesn't come on very often and finally 6) some lung spots that come and go but don't bother me. I feel sooo lucky I can still work and don't have the pains, brain fogs, etc that other folks have.
So we are all different in our symptoms. Good luck in dealing with yours.
Hi Collygirl
Welcome from me too. I understand your emotions. I think my worst was fear. It was only after finding this wonderful site, and sharing with others with more experience of Sjogren's that I realized it was only a name for something that had been affecting me for yearss. The only difference was, now I could get treatment, and people were more willing to make some allowances for my tiredness.
Looking forward to getting to know you.
Kathyx
Welcome from me, too. I know just how you feel about being angry! But don't you also feel some relief in puttung a name to this weird thing and knowing that now you can get on with handling it. I was diagnosed in early December and still finding it hard to accept and still trying to do what I need to do to try and live a half decent life. But it is happening and it will for you too.
This is the greatest place to come to, because when others have never heard of SS and certainly don't understand it, and this will probably include your family, everybody here knows all about it and just how you are feeling. I was shocked the first time I came here to see there were all these other people having these weird symptoms that I had. I thought I was the only person with this!
All the best!!!!
Hi Collygirl,
Let me also welcome you to the SJS World and family! Take your time, look around, and hopefully you'll find answers to your questions looking through the topics that can be located by the search engine on the upper left hand of the page. If you can't find what you're looking for, please do post as there is usually someone about that might be able to help.
I know how scared you must be, but hang in there, okay? You can get through this, honest.
Again, welcome and I hope to chat with you soon!
Take care of yourself -
Patze
Hi Collygirl :)
I just want to say welcome too!
Take care - Scottie :)
Thank you all for the wonderful welcome. I am so glad I found this forum. What an amazing group of people.