Have been to the Sjogren Centre today and the result of the biopsy was also not entirely good, but insufficient to diagnose Sjogren, just as my bloodwork. The rheumatologist called it 'Sjogren like' and sent me back to the hospital in my town. There they must treat the symptoms and the neurologist must again look to the nerves in my feet, because there is something not in order. The rheumatologist said that I am in the 'waiting room'. Or it gets worse and and then it will be visible in my blood and will fit the criteria of Sjogren or it willn't get worse. The first thing I thought was: maybe it will pass and I will get better! But maybe that's false hope... I don't know if I'm happy or not. Because, I'm still very tired and have a lot of muscle pain and pain of my joints. But no so sjogren. May I actually still write on this forum? Funny, I should be happy, because Sjogren is no party, but why do I have al the symptoms? Anyone suggestions?
Thak you all!
Gonzo
Gonzo
That sounds quite a frustrating appointment. But, I don't think it says you don't have Sjogren's, just that it might be sero-negative. And, of course you can still post here. You are one of us whether you have a diagnosis or not.
Hugs
KAthyx
They haven't completely ruled out Sjogren's and it sounds like they believe that's where it's heading. Some people have symptoms for a long time before they official jump over the line of having positive tests. One of my doctors said she completely disagrees with that logic for a few reasons, mainly because this criteria for diagnosing is man-made but this disease is biologic. We don't go from not having the disease to having it just because the blood work changes. It's also thought now that treating these conditions early and aggressively then you can put it into remission.
I'm in a similar position, I have Undifferentiated Connective Tissue Disease/Early Sjogren's. I'm on the same medication as most people with Sjogren's, I have all the symptoms and I feel like I can relate to many things people post about on here. Definitely stay here, you're fighting the same battle.