I have not yet been diagnosed, and am seeing a Rheumatologist on the 29th, but in the meantime I'm hoping someone can provide some insight. It’s a bit of a long story, but I will try and make it as short as I can.
Started with a bunch of swollen lymph nodes, and one large one behind my ear (ping pong ball size). Long story short it was removed surgically to biopsy it, and turned out to just be a huge mass of infected tissue- ICK! Was treated with about 3 different antibiotics and a round of steroids to try and bring down the other nodes, but they just kept growing. All the blood work they had run at this point was fairly normal, with only my white blood cell count a little off (made sense with the infection). Needle biopsy of two large nodes ended up showing some sort of reactive tissue and could not rule out lymphoma, so had another surgery. They removed a cluster of nodes from my neck only to find that it was not only lymph nodes, but part of my parotid salivary gland that had apparently ended up in my neck and gotten infected. Strange! Good news, nodes were benign. All of this happened within about six weeks.
Here we are 5 months later, and all the symptoms I have had this whole time have not let up. This includes the swollen nodes, pain/stiffness in my neck, fevers, headaches (not the normal migraines I’ve always had), extreme fatigue, constant colds/sinus infections/cough, and night sweats. Not to mention the latest MRI (I’ve had 3 now) shows a bunch of new swollen nodes, the largest being 1.6 cm and a few others at 1.3. I’m sure there are a few things I’m forgetting, but you get the idea.
Well at my last visit the ENT had a hunch and tested my SSA/SSB even though my ANA was negative before. Sure enough my SSB was positive, although my SSA was negative. Doc asked if I have dry eyes, which I do, but I’ve always blamed it on my contacts. I had another eye infection when he called, kind of ironic. Asked if I have dry mouth and I at first said no, but then realized I’m always thirsty. Don’t know if that’s the same thing or not.
So basically, I’m confused. My ANA was negative, SSA negative, but SSB positive. From what I’ve read it does not appear that anything can be diagnosed by just one test, so I’m trying to figure out if I do/don’t have Sjogren’s. I’ve also read that it’s strange to have negative ANA and positive SSB. Does that mean it could be a false positive? Would really rather pick something else off the menu, because this does not sounds like any fun! Oh, and I’m a 31 year old female, if that matters.
Sorry that was not as short as I planned. Oops. Appreciate any insight you guys can provide. Waiting all month (after already having a really rough 6 months of this) feeling like crud is no fun!