After my initial consultation with my Rheumy, who at THAT TIME said I had primary Sjogrens, then went on to do more tests to confirm. I have looked through many of the posts on this site and found quite a few where people write to say that their blood work showed negative for Sjogrens, yet their Rheumy's treat them for it and the same with lip biopsy's, some people show negative, yet they are taken seriously. I would consider myself as having many of the symptoms and positive blood work pointing to Sjogrens, yet I hear that my lip biopsy shows 'mild' chronic inflammation and yet my Rheumy now seems to be sitting on the fence. I don't have all the results yet, but I want to scream.... How come some consultants will treat symptoms and dx Sjogrens and yet others won't and are slow to come to any conclusions??????
With a high RF factor of 153, should I be seeking medication so that I don't damage any joints?
I live in the UK and not sure what I should do apart from shout at the top of my voice! Any ideas???
Hope you can help me.
I don't really want Sjogrens, but I want a label on all the problems I am having, does this make any sense?
I have not been diagnosed for very long (just over a year), but like many here I was sick for a long time before that. For what it's worth, here's what I think about this issue:
It is frustrating, but part of the problem is that even the BEST doctors don't really understand these diseases - no one does :-[.
Many autoimmune diseases imitate each other and overlap, so it can be very difficult to classify them. In fact, as they find out more about how the immune system functions, my guess is that all the current disease names and classifications we now think of ("Lupus" vs. "Sjogren's" vs. "IBS" etc etc etc...) will become obsolete, as will the "primary" and "secondary" labels.
So - in some ways, I can sympathize with the doctors.
My issue with them is that sometimes they let that inability to get a definitive diagnosis get in the way of helping human beings out of their suffering. Some docs operate on the principle "No firm diagnosis = No treatment", and that is really unfortunate because the fact that you have no long scientific words to attach to your problems does not mean that they disappear or cease to make you miserable! Scientists hate ambiguity, and this sort of illness is FULL of it.
Sometimes you have to demand treatment for whatever is going on....let them know that "yeah, we might not know what it is, blah blah blah, but I AM IN SERIOUS DISTRESS, and can you please help me SOMEHOW?!" Maybe that means more testing, maybe it means trying some medication - who knows? But there is no excuse for allowing somebody's life to spiral down the toilet just because the docs haven't reached a neat, tidy conclusion yet.
With autoimmune diseases, sometimes it takes years to figure things out.
The GOOD news is that if there is strong indication that SOMETHING autoimmune is going on, it doesn't really matter what label you attach to it - the baseline treatment tends to be the same - Plaquenil, and possibly some steroids for a while. Then at least you (hopefully) get some relief, and they can continue debating and testing to their hearts' content.
It is hard to be patient - it's hard to not KNOW what is happening, to have a box to put it in. Keep trying, be open to wherever this takes you, and know that it can be a long road sometimes. And don't let them off the hook! ;)
I wonder why she wanted the lip biopsy if you had positive blood work AND symptoms!? I was dx just on labs - extremely high ANA, SS-A and RF. My doctor never even suggested doing a biopsy - he just told me my labs were consistent with Sjogren's, and my ANA was so high it was clear I had something autoimmune going on even before we discovered the SS-A and RF. I was started on Plaquenil right away, and stayed on it for a little over a year. Unfortunately, I was not helped much by it and developed new symptoms in the past year and a half, and I'm now on Imuran.
I really hope you can get your symptoms taken seriously and start receiving proper treatment. I can't imagine how frustrating it is :(
My rheumy mentioned last visit you needed the new criteria to be diagonsed (+ lip biopsy, + bloodwork, or whatever for your eyes) and then looked at me thoughtfully and said, you have none. Then she corrected herself saying well that is for research purposes, we need to treat your symptoms.Thank God. Now I have moved away and may be referred to a new center. The LAST THING I need is to go to someone new who won't treat a seronegative. I have not yet done the lip biopsy.She didn't want me to do it.
My biggest fear is a new rheumy = no salagen, no plaquinel. I would not survive well.
Hi everyone, latest update from secretary is that Rheumy has requested a full report from my lip biopsy, she obviously wasn't happy with what came back from the lab. Either she is sticking to the rules e.g. (lip biopsy + blood work + symptoms etc) equals a diagnosis or she's just being super efficient and will treat appropriately as and when needed. I do however hope that she does take my health issues and symptoms seriously, because I DO! Past two morning I have been woken up early with real pain in my body and joints.
Either way this delay has left me hanging on until results come back. (I need to switch my thoughts off!)
4Kids - I do hope that if you change centres you will find a great Rheumy. By the way, what is sero-negative opposed to sero-positive? How would I know what one I am? Does this show up in your blood?