Lip Biopsy Fail
I’m so irritated right now. I’ve been tested for Sjögren’s a couple of times by a couple of different doctors over the years, just blood work and it’s always been negative for both ssa and ssb. Once by an ENT after repeated bouts of salivary gland swelling and a salivary gland endoscopy that showed I had sludge rather than saliva.
Dentists have told me for years I rely on the accessory glands in the lips and cheeks because milking my salivary glands barely does anything. I am dryyyyy.
Orthopedic specialist tested for Sjögren’s went I was there for a finger injury and ended up with cysts on my tendon sheaths from doing hand physical therapy.
My ophthalmologist said I have micro pitting and erosions on my corneas because my eyes are so dry.
I’ve been having a ton of sinus infection symptoms but don’t really have drainage unless I’m on antibiotics… ENT (a different one) asks me if I’ve ever heard of or been tested for Sjögren’s. I say yes, but blood work comes back negative. My mom has Sjögren’s and I have multiple sclerosis. She says “have you had a lip biopsy?” I hadn’t. She tells me it’s definitive, they can schedule and do the biopsy and refer me to a rheumy if needed. Sounds good to me! A chance to get an answer/diagnosis and treatment options??? Yes!!
I’ve read about lip biopsy for Sjögren’s. 1/2” incision in the lower lip, 4-7 glands removed, need 4mm squared area of tissue around the gland. Looking for focal lymphocyte infiltrate.
I had my lip biopsy done on May 1. My path report says “single light tan specimen” “3.29 mm sq surface area” “scant sample” and mentions “no nodular lymphocyte infiltrate in scant sample”
Aren’t we looking for local, not nodular? (Yes, the dx code was for Sjögren’s) And why in the WORLD did he only take and send a single gland?!?! I paid $971.63 for this. And I feel like the ball was dropped. This was fumbled. It was not done correctly and I am nooooooot happy.