Good news is that I tested negative for Lupus and autoimmune thyroid. Bad news is - it is primary Sjogrens. I guess, like the Doctor said, it had to be something autoimmune with an ANA result of 1:1280.
So begins my Sjogrens journey. I will be depending more on this website as I learn my way.
Thanks again to everyone.
Becky
Hi Becky,
It may be small concession to you right now, but least you know what you are battling.
Take one day at a time, Becky. Expect to feel a lot of emotions right now, but remember that we are all here for you. ;)
Becky,
Well, your wait on those results is over, and now you have some answers. As Carebear said, expect a lot of different emotions to come out. It is very normal to feel relieved to know what it is, possibly worried about your future health and what will happen, a bit angry why this happened to you, just a bit overwhelmed or all of it at the same time!
Remember, we are all with you on your journey. We're either going through the same beginning as you, a little further along, or old hands who've dealt with this a long time. There are lots of ways to manage this, and I hope this site helps you.
Please keep posting and keep us updated.
Take care,
Melinda
To reiterate- at least you know what you are fighting- better than not knowing. At least you can now make a plan of action. Emotions will be all over- be gentle with yourself. Let your family and friends support you- they may need to feel needed too. Keep us informed- good luck ;)
Thanks everyone. Yes, I am trying to take all this in. So many people don't know what Sjogrens is. Myself included. I had not heard of it before experiencing the effects of it.
This site is an amazing source of information and support.
its amazing what you feel when they can finnaly put a name to something,, like your finnaly validated,, thank goodness,, I am happy for you,, not that you have it,, but that you have a NAME for it,, not some doctor telling you,, its not this and not that,, so its nothing,, good luck,, although I really hate to say that,, luck is almost not getting hit by a train, good luck doesnt apply when your sick,, you either get better or worse,, no luck invilved,, God I hate that phrase,, good luck,, it even sounds stupid,, oh me,, here I go off the main track again, derailed,,
becky,
that's what FINALLY got me refered to a Rheumy, after having
Sjs symptoms along side the Fibro for sooo long at that point.
The positive ANA with the high titer like yours.
I mean, why on earth refer someone to a Rheumy on symptoms alone....(duh).
validation meant alot to me as well.
that 'technical-medical proof' is the ammo we need sometimes to
deal with some difficult people we inevitably encounter out there.
unfortunately, i have had to include some doctors in that group over the years. lol
Becky, please read "Spoon Theory" if you have not read it yet. http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
Find what works for you.
Welcome to the forum there is a lot of good information here.
Becky,
Coming into this late, but I also wanted to welcome you to Sjogrens World!
I hope you continue to find this place useful and have some fun with many new friends along the way!