My rheumatologist recently told me about a brand new blood test which is very promising for ID'ing Sjogren's, since standard tests only show about 50% positive results. It's also supposed to give more detail about specific things within the blood related to the disease. I just had my blood drawn today for it. Not sure how long the results take, but I'm hopeful for a positive result (since I already know I have the disease). My blood work was always negative for SS but my clinical presentation is textbook. Now I wait...
I'm still waiting for my results as well. It's only been about one week.
It took nearly two weeks before my results came back.
There are a couple threads about this test. You can use the search function to find them.
Hopefully, your rheumy will treat your symptoms regardless of the results!!
My test came back negative, back to the drawing board. Sigh
For ages and ages I assumed I had seronegative Sjogren's. I thought maybe one day I would eventually sero convert. But maybe not before I died!
And then I found out that I couldn't have Sjogren's because I will never have auto antibodies. I have an Immune Deficiency Disorder. That does't mean I don't have all the symptoms of Sjogren's.
My Immune system, in all its glorious deficiency is sending out the attacks on my body, on my tear and saliva producing organs, on my nerves, all of them it seems, and produces bizarre deficiencies in iron and copper, among other things.
My immune system doesn't allow auto antibodies to exist and attack me, it just send out the attack with cytokines (don't ask me what they are but they attack me).
My Immune system produces symptoms like allergies, in fact I have tested allergic to almost everything. And yet I have almost no IgE, the antibody the causes allergies.
Without lots of IgE I can't technically have allergies.
Do you see what I'm getting at Tharrell, and all of you who are wandering in the wilderness of no test results that confirm your miseries?
I'm saying you have an Immune System that causes problems. And we just don't have the right tests yet to define those problems.
If you are getting Plaquenil, Methotrexate, Prednisone, you are getting all the treatments there ARE for autoimmune conditions except for a few exotic new biologicals.
It is hard not to get confirmation, I KNOW. I lived there until I was 69/70. I didn't start treatment of my Immune Deficiency until I was 71.
I'm not staying YOU have an immune deficiency. I'm just saying that you will perhaps never get confirmation, but you KNOW and I KNOW and good doctors KNOW that something is going on.
Hang in there.
Hugs, Elaine
Elaine,
Not sure why you think that being immune deficient precludes you from having an autoimmune disease. Actually, an immune deficiency increases your chance of autoantibody activity. See below from Primaryimmune.org about CVID. They are a pretty reputable source.
http://primaryimmune.org/about-primary-immunodeficiencies/specific-disease-types/common-variable-immune-deficiency/
"Patients with CVID also have an increased incidence of autoimmune or inflammatory manifestations, granulomata and an increased susceptibility to cancer when compared to the general population. Sometimes it is the presence of one of these other conditions that prompts an evaluation for CVID.
As you have even stated before, up to 25% of those with AI disease also have immune deficiency...and vise versa.